Nathaniel Comfort – author of The Science of Human Perfectionand recent guest on Talking Biopolitics with fellow eugenics historian Alexandra Minna Stern – writes about enthusiasts who advocate using new genetic engineering techniques to attempt to alter the traits passed on to future generations, a practice called human germline modification. Some public personae embrace the term “liberal eugenics” and argue that a “free-market environment with real individual choice” is the best way to protect us from repeating past eugenic abuses. But, as Comfort warns, “liberal eugenics is really neoliberal eugenics.” And the invisible hand of the market isn’t pulling back on the reins of technological progress anytime soon.
In countries outside the U.S. with a more honest memory of state-controlled human betterment projects, there is no beating around the bush of what’s at stake. In addition to the history of public outcry that Comfort recounts, there has been an international consensus for decades that engineering the human germline is off-limits. More than 40 nations have passed legislation to ban it outright—including nearly all nations with developed biotech sectors except for the United States. The United Nations has declared the human genome the “heritage of humanity” which ought to be protected and transmitted to future generations—without markups and edits. And UNESCO’s International Bioethics Committee has stated that justice demands we do not interfere with the biology of future humans based on the “particular conceptions of ‘good’ and ‘bad’ human traits” of our time.
The debate about CRISPR gene editing is currently dominated by discussion of whether it would be “safe” to edit human embryos, a fixation that serves to downplay the historical, social, and political contexts that Comfort so richly describes. While CRISPR and related techniques can also be used as “gene therapy” to help people who are sick, the argument that gene-editing human embryos is a necessary medical treatment is tenuous: Couples concerned about passing on serious genetic diseases can use pre-implantation genetic diagnosis to screen embryos—and although this technology also raises eugenic concerns, it does not pose the same biological and societal threats as does the genetic manipulation of the human germline.
When he moves from history to current politics, Comfort explores the ways in which the issue of human germline gene editing can scramble political allegiances, precisely because of the larger motivators—private interests and social inequality—that a system wed to neoliberal individualism is failing to address. In an age where personal choice can easily obscure the impact of our self-interested decisions on others, developments in human biotechnology present many ways to stumble. Comfort concludes:
In short, neoliberal eugenics is the same old eugenics we’ve always known. When it comes to controlling our evolution, individualism and choice point toward the same outcomes as authoritarian collectivism: a genetically stratified society resistant to social change—one that places the blame for society’s ills on individuals rather than corporations or the government.
I’ll be excited to watch the workaday applications of techniques like CRISPR unfold, in medicine and, especially, basic science. But sexy debates over whether reproductive biotechnology will permit us to control our genetic evolution merely divert us from the cultural evolution that we must undertake in order to see meaningful improvement in human lives.
[Forgotten Stories of the Eugenic Age is a blog series exploring the lesser-known ways that eugenics affected and engaged American lives during the first half of the twentieth century.]
For American women in the early twentieth century, marriage was a dangerous affair.
Upon her marriage, a woman’s civic and social identity became subsumed in her husband’s. A wife was expected to be subservient in the home and in the marital bed. If a husband became abusive, indifferent, or otherwise lackluster, she had little recourse. Divorces were rare, difficult to obtain, and stigmatized.
Even if a woman could obtain a divorce on grounds of cruelty or adultery, separation was often impractical. Few women worked after marriage and even fewer after having children, leaving most financially dependent on their husbands. To make matters worse, judges in divorce cases typically awarded custody of children to their fathers. Sexually transmitted diseases were rampant, alcoholism was epidemic, and even discussion of these serious matters—especially in regards to their impact on women—was considered uncouth. For all these reasons, a woman’s choice of spouse was likely to be one of the most important determinants of her lifelong happiness.
But broad social changes were afoot. The middle-class “True Woman” of the Victorian Era—passive, pious, frail, and domestic—was facing challenges from the Progressive Era “New Woman”—passionate, opinionated, independent, and well-educated. The New Woman studied in university, worked before marriage and occasionally after, and didn’t hesitate to tackle some of the more difficult and uncomfortable marital and reproductive matters of the time.
In this context, the field of eugenics emerged as a lens through which white middle-class women could more deeply examine these issues and solve the “marriage problem.” As a 1909 Current Literature article declared, “Marriage is, essentially, a science.” And indeed, eugenists advised women to learn all they could about the scientific basis of marriage, and then put the facts into practice in life’s laboratory. If women carefully studied eugenics, they could determine with the greatest accuracy which man to marry to ensure a happy future.
Eugenists argued that the negative traits men could display after marriage, such as alcoholism, promiscuity, feeble-mindedness, and cruelty, all had a hereditary basis. Furthermore, claimed Dr. Woods Hutchinson, Clinical Professor of Medicine at New York Polyclinic, these traits were not limited to "the communities of chicken thieves [and] feudists who fight and inbreed among themselves and live like animals," but could also be found "on the roof of society, among the idle and mentally weak." Since any man regardless of class status or outward appearance could have hereditary defects invisible to the untrained eye, middle-class women hoping for a happy marriage had to be vigilant to protect themselves.
Here, eugenists combined an insistence on the hereditary nature of most undesirable traits with a healthy scorn for the traditional practice of shielding middle-class women from some uncomfortable truths about sex and married life. Dr. Anna Blount, one of the most well-known women eugenists, warned that eugenically inferior men were more likely to contract devastating venereal diseases—euphemistically called “red light diseases” or “social diseases”—that they would then pass on to their wives and subsequent children. Even "modern novelists," Blount wrote, are unable to convey the misery of "the blooming bride transformed in a few short months to the querulous invalid, or returning from the surgical operation at the hospital with the best of life and hope gone." Blount further cautioned that cruelty and the propensity for wife desertion were hereditary. Women needed to educate themselves about eugenics to safeguard against marriage to such men.
Dr. Norman Barnesby counseled that alcoholism was either a symptom or a cause of natural inferiority. Women may idealize marring an alcoholic man to reform him, but these innately hopeless causes would produce a "wrecked life and a dreary home." With statements like these, eugenists warned women that despite their hopes that the men they marry will abandon their damaging habits, love cannot eliminate inborn qualities.
Along with developing awareness of eugenic principles, eugenists emphasized that women could undertake special eugenic training to help identify signs of insidious degeneracy in prospective marriage partners. Professor Dean Inge of Cambridge University and the Eugenics Education Society claimed that without eugenic knowledge, women might find themselves drawn simply to a man's "fine and strong physique," despite lack of adequate information about his health. But the development of a "scientific eye" could help them avoid these womanly pitfalls.
Virginia Hinkins, who taught eugenics at Indiana University's YWCA, provided some concrete love-interest examination tools. When gazing deeply into a lover's eyes, she advised, women should not look for the "yearning, burning, soulful fires, which rage in the erotic litany of love," but for symptoms of eye disease. She continued, "His heart, to beat true, must pump seventy-two to the minute, and his sighs should rest under suspicion as indicating a liverish and morbid disposition." Eugenists also pressed for local and state governments to adopt laws requiring men and women hoping to marry to first present a eugenic health certificate signed by a physician indicating that they were fit to wed.
If these suggestions appear to strike a blow to romance, eugenists certainly didn't think so. Dr. Elizabeth Hamilton-Muncie asserted that eugenists wanted love to be essential for marriage but also desired that couples love "with their eyes open and brains active." Learning about eugenics would enable women to pursue romantic relationships with a healthy dose of common sense, contributing to a more informed, and thus purer, love. Notable British eugenist and sexologist Havelock Ellis wrote that marriage between two young healthy “wholesome wooers” in love was more likely to benefit the race than a money marriage between a young woman and a sick, elderly man. Love marriages were often eugenic by nature compared with marriages for money, social status, or simple convenience because love required people to find worthy characteristics in one another.
Some newspapers bolstered this connection between eugenics, love, and marriage with profiles of “eugenic” weddings. These weddings typically occurred between wealthy, well-educated, and socially prominent men and women who were vocal about their support for eugenics and their conviction that their marriage conformed to eugenic ideals. Along with the usual details about the bride’s family, the groom’s occupation, and the honeymoon destination, these flattering profiles frequently described the couple’s physical qualifications and eugenic credentials.
One such eugenic wedding occurred between Leo B. de Lano—quite the renaissance man as an "athlete, aquatic hero, temperance advocate, hat salesman, USC graduate, adventurer, and extremist”—and Betty Wehrle, "about as pretty a girl as ever posed for an artist." A Los Angeles Times article noted that de Lano was 5 feet 10 inches tall and 175 pounds, Wehrle was 5 feet 4 inches tall and 110 pounds, and both were “perfect blondes” who were “practically perfect physically,” as evidenced by the eugenic health exams to which they had submitted before agreeing to wed.
The previously cited Virginia Hinkins, who herself had a eugenic wedding, said that eugenic marriages were born out of “a normal desire to know the standing of a life partner, the only human insurance we can get for permanent love and happy married life." At a time when women’s life options significantly diminished after marriage, some middle-class women turned to eugenics in fervent hope that this “science” could assist them in making the best possible marital choice. In a way, focusing on scientific selection of a spouse was a way to avoid addressing the serious issues women faced once they were married. Eugenics provided assurance that women could identify a good husband, and that happiness would naturally follow.
Yet women’s interest in eugenics during this period also indicates their concerted effort to grapple with the difficulties and dissatisfactions of marriage and to claim greater control over their lives. It is poignant that in the early twentieth century, marrying eugenically appeared more attainable than social reforms to expand married women’s economic and legal options and to reduce the stigma of domestic abuse.
1. Barnesby, Norma. "Eugenics and the Child." Forum (Mar. 1913): 341.
2. Blount, Anna. "Effect of Divorce on the Next Generation." San Francisco Chronicle, Jan. 28, 1917.
3. Blount, Anna. "What Marriage Health Test Bill Means If It Becomes Law." San Francisco Chronicle, Mar. 18, 1917.
4. Dicker, Rory. A History of U.S. Feminisms. Berkeley, CA: Seal Press, 2008.
5. Ellis, Havelock. "Why First Love Is Always Wrong." Chicago Daily Tribune, Nov. 24, 1912.
6. "Eugenic Wedding to Begin the New Year." Los Angeles Times, Jan. 01, 1914.
7. "The Future of Love-Making in the Light of Science." Current Literature OL. XLI, (Jul. 1906): 97.
8. "Marriage As the Youngest of the Sciences." Current Literature OL. XLVI., (May 1909): 561.
9. "Real Eugenic Marriage." Los Angeles Times, Dec. 31, 1913.
10. Schneider, Dorothy and Carl J. Schneider. American Women in the Progressive Era, 1900–1920. New York: Facts on File, 1993.
11. "'Science First' in This Wooing." Chicago Daily Tribune, Oct. 25, 1915.
12. "Science in Marriage: Knowledge of Eugenics Would Prevent Unwise Unions." Washington Post, Mar. 20, 1910.
13. "Won't Banish Cupid: Dr. Elizabeth Muncie Defends the Purpose of Eugenics." Washington Post, Jul. 07, 1914.
14. "Would Check Birth of All Defectives." New York Times, Sep. 21, 1912.
A bipartisan bill introduced in the Senate on June 25 would give a financial break to people in North Carolina and Virginia who were sterilized under those state’s official eugenics programs, and who are now hoping to receive compensatory payments that have been established by their state legislatures. If passed, it would be the first federal legislation to recognize the history of sterilization abuse that took place during the twentieth century in the name of eugenics.
Senate Bill 1698 would exclude payments from current or future state eugenics compensation programs from consideration in determining eligibility for Federal benefits including Medicaid, Supplemental Nutritional Assistance Program, Supplemental Security Income, and Social Security Disability Insurance. It was introduced by Senator Thom Tillis (R-NC), who was joined by Senators Mark Warner (D-VA), Tim Kaine (D-VA), Tom Carper (D-DE), and Richard Burr (R-NC). On July 8, Congressman Patrick McHenry (R, NC-10) and Congressman G. K. Butterfield (D, NC-01) introduced companion bill H.R. 2949, the “Treatment of Certain Payments in Eugenics Compensation Act,” in the House of Representatives.
Between 1907 and 1977, 33 states passed laws authorizing eugenic sterilization of various categories of people (including “criminals,” the “mentally ill,” and the “feeble minded”). Populations most often targeted by the eugenics programs were unmarried women, African-Americans, and poor children.
Only two states have issued plans for reparation through monetary compensation. North Carolina became the first to enact legislation to compensate living victims of forced sterilization laws in 2013, setting aside a $10 million compensation fund. Following North Carolina’s example, Virginia passed similar legislation in 2015. While North Carolina identified 220 living sterilization survivors; Virginia has identified only twelve so far. Virginia will award $25,000 to each involuntarily sterilized person who was alive as of February 1, 2015.
Unfortunately, many North Carolinians and Virginians who were sterilized against their will do not qualify for reparations, and thus would receive no benefits from the newly introduced federal legislation. The states’ current compensation laws say that to be eligible for compensation, the sterilization operation must have occurred under the state's Eugenics Board. However, judges, local health officials, and social service workers were also permitting and arranging sterilizations, as in the case of Debra Blackmon.
In a short video about the bill, Senator Tillis encourages “other states to follow North Carolina’s lead, as Virginia has recently done, to right this wrong in our nation’s history.”
Fitter Family contest medal, awarded by the American Eugenics Society, 1920s.
Source: Center for Genetics and Society
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Forgotten Stories of the Eugenic Age is a blog series exploring the lesser-known ways that eugenics affected and engaged American lives during the first half of the twentieth century.
Eugenics became a popular ideology in the United States beginning in the second decade of the twentieth century. Concerned with producing a stronger and fitter population through the careful and often coercive control of reproductive behavior, eugenics captured the attention of a citizenry eager to use science to solve its social problems.
Many scholars divide the early eugenics movement into two branches: “positive” and “negative” eugenics. Positive eugenics was the encouragement of reproduction for those believed to be of superior hereditary stock, in contrast to “negative” eugenics, the discouragement or prevention of reproduction for those deemed hereditarily “unfit.” Many eugenists, as eugenic advocates were known, believed that the goals of positive eugenics could be achieved voluntarily through education campaigns, while negative eugenic aims would require more coercive means for attainment, such as mass sterilization and immigration quotas.
Baby health contests at agricultural and state fairs perhaps most vividly exemplify popular campaigns for positive eugenics. Judges at these contests examined infant contestants according to a set of criteria for physical health and intelligence that included factors such as shape of the head, width between the eyes, condition of tonsils, strength of spine, and ability to walk or crawl. They quite tellingly employed scorecards derived from those used to judge livestock. First begun in 1908 at the Louisiana State Fair, baby health contests spread to forty states within just a few years.
However, somewhere along the eugenic line, "Better Baby" contests, as they were known, morphed into "Fitter Family" contests that examined not only the baby but the whole family. Scholars have attributed this change to a shift in focus from the health and development of the child towards a more comprehensive look at hereditary history, in keeping with the principles of eugenics. But how exactly did this change transpire?
Mary T. Watts, co-founder of the Better Baby contests, revealed the impetus for the transformation in an address at the Thirty-third Annual Meeting of the International Association of Fairs and Expositions in 1923.
As Watts recounted, shortly after she began the Better Baby contests in her home state of Iowa, she received a letter in the mail from none other than Charles B. Davenport, a titan of the eugenics field. Davenport wielded significant influence as the director of the Biological Laboratory at Cold Spring Harbor, the Eugenics Record Office, and the Carnegie Institute of Washington’s Station for Experimental Evolution.
On a one-cent postcard, Davenport had written only, “You should give 50 per cent to heredity before you begin to score a baby.” Overwhelmed by answering inquiries from intended Better Baby organizers across the United States and Canada, Watts placed the letter aside and forgot about it.
The following year, she received yet another terse postcard from Davenport with the single ominous sentence, “A prize winner at two may be an epileptic at ten.” Watts, who had since become aware of Davenport’s authority in eugenics, understandably found the postcard “so startling it could not be ignored.”
Watts shared Davenport’s letter with her Better Baby co-founder, Dr. Florence Sherbon, who noted that many prize-winning babies likely had alcoholic fathers, diseased mothers, or insane relatives. Perhaps Davenport was on the right track; rather than examining babies alone, in order to truly test for eugenic ideals, judges must look to a baby’s family as well. How else could they tell if a baby was “better”?
Watts and Sherbon decided that they wanted to insert family and heredity tests into the contests, but were concerned that doing so would eliminate their popular appeal. It took the pair six years to develop a satisfactory approach. They presented their plan for Fitter Family contests to a group of experts who offered a mixed response.
The experts universally approved of the reasoning behind the new plan, but felt that Fitter Families would not be able to replicate the smashing success of Better Babies. Watts recalled that the experts said, “You can bring the baby to the fair because he cannot help himself, but you will never get the fathers and mothers to a fair for physical and mental examinations.” The experts were especially concerned that adults would not submit to the Wassermann test for syphilis, presumably because some would not want their spouses to discover the results.
Nonetheless, the experts assisted in making a scorecard to judge not only the babies’ physical and mental qualifications, but also those of their parents and siblings. All were shocked when twenty families entered the first Fitter Family contest at the Kansas Free Fair in 1920. The Fitter Family contest organizers continued their newfound relationship with Davenport well into the 1920s, as Sherbon and Watts sought his advice on their family history forms and contest procedures.
Critics of the Fitter Family plan had said that “we could never hope to interest educated, self-respecting families in physical examinations for adults at a fair ground.” But, Watts stated proudly in her 1923 address, the Fitter Family contests were thriving. And the organizers and contestants—as well as the eugenic cause—could thank Charles Davenport, whose postcards had provided the spark that lit the fire.
1. Lovett, Laura L. “‘Fitter Families for Future Firesides’: Florence Sherbon and Popular Eugenics.” The Public Historian 29, no. 3 (Summer 2007): 69–85. JSTOR.
2. Selden, Steven. “Transforming Better Babies Into Fitter Families: Archival Resources and the History of the American Eugenics Movement, 1908–1930.” Proceedings of the American Philosophical Society 149, no. 2 (June 2005): 199. EBSCO host.
3. Watts, Mary. "Fitter Families for Future Firesides." Billboard 35, no. 50 (Dec. 15, 1923): 230–231. ProQuest.
The documentary No Más Bebés, Spanish for “no more babies,” portrays the stories of Mexican-American mothers who were coercively sterilized at LAC+USC during those years. Directed by Academy Award nominee Renee Tajima-Peña and produced by UCLA historian Virginia Espino, the film premieres at a sold-out screening on Sunday, June 14 in the LA Muse section of the Los Angeles Film Festival. An additional screening has been added to the film festival on Tuesday, June 16 due to popular demand.
The film explains that women were asked by their obstetricians to sign consent forms for emergency caesarean sections while in the late stages of active labor. Most did not speak English; many do not recall being offered these forms. None knew that they were agreeing to tubal ligation procedures while giving birth.
As the film depicts, these women sued their doctors in the landmark Madrigal v. Quilligan case after they discovered they had been sterilized. It juxtaposes rare archival footage of the trial and the emerging Chicano rights movement with recent interviews of the women who were subjected to the unwanted procedure.
Madrigal v. Quilligan was a federal class action lawsuit involving the sterilization of ten Latina women without informed consent. Initially, the lawsuit named Dr. Edward James Quilligan, head of the Women’s Hospital at LAC+USC when the sterilizations were taking place; the LAC+USC Medical Center; the Department of Health, Education, and Welfare; and the U.S. Government. The defense argued successfully that charges against Dr. Quilligan and others holding positions of power within LAC+USC should be dropped, leaving as defendants the ten doctors who performed sterilization procedures on the plaintiffs. This in effect transformed the case into a set of personal grievances, rather than a case against institutional biases.
While the lawsuit led to better informed consent for patients, requiring that hospital forms are translated to multiple languages so that patients can understand the procedures completely, the judge ultimately sided with the county hospital, ruling in favor of the doctors. He argued that it was not objectionable if a physician thought that a tubal ligation could improve a perceived overpopulation problem.
The documentary interviews a wide range of the key figures in the case: the lead plaintiff, Dolores Madrigal; defendant Dr. Edward James Quilligan; five other women sterilized without their consent; and Antonia Hernandez, the lawyer who represented them in the trial. It also includes Dr. Bernard Rosenfeld, who suspected that Mexican immigrants were being sterilized by tubal ligation without their consent and helped expose the malpractice at the hospital. Rosenfeld is now a nationally known specialist in tubal ligation reversal surgery.
No Más Bebés draws on the growing body of research into the history of sterilizations in California by scholars such as Elena Gutiérrez and Alexandra Minna Stern. Unfortunately, this history is not that far behind us. In 2003, California Governor Gray Davis issued an apology acknowledging that “between 1909 and 1964, an estimated 20,000 Californians were sterilized” under California law in state-run institutions. However, the apology does not address the sterilizations that took place at LAC+USC during the 1960s and well into the 1970s.
Even more recently, evidence emerged of unauthorized sterilizations in California prisons due to persistent efforts by Justice Now and an extensive investigation by Corey Johnson of the Center for Investigative Reporting. Those revelations prompted a state audit and a 2013 bill, authored by State Senator Hannah-Beth Jackson, which prohibits coercive sterilization for the purpose of birth control for people incarcerated in California prisons.
No Más Bebés will alert many more people to these sadly under-recognized chapters of California’s past, while educating its viewers about the coerced sterilizations at LAC+USC and honoring the women who were its victims by sharing their stories.
The Scope of Eugenics, held at the Banff Centre from May 22-25, focused on eugenics as both a historical practice and an ideological motivation. In addition to many presentations about the history of eugenics in North America, the conference sought to connect these historical examples to what participants called “Newgenics.”
Newgenics is a term used to describe current and emerging medical, political and social practices aimed at “improving” humankind, and at eliminating disability and difference. These goals are often accomplished through gentler means than those historically used in the service of negative eugenics. But Newgenic practices include coercive sterilization as well as, prenatal testing, educational standards, and institutionalization. Human germline modification, now being discussed as a real prospect, would also fall in this category. Newgenics retains the same eliminative logic of twentieth-century eugenics, though often in more subtle and differently problematic ways.
In attendance were Judy Lytton, Leilani O’Malley (Muir), and Glenn Sinclair, whose stories are featured in the upcoming documentary Surviving Eugenics, which provides a unique insiders' view of life in institutions for the "feeble-minded" during the mid-twentieth century, and raises broad questions about disability, human variation, and contemporary social policies. The film’s protagonists are people who were themselves sterilized at the Provincial Training School for Mental Defectives in Red Deer, Alberta, and their testimonies added a uniquely personal experience to the discussions of emerging Newgenic issues.
Members of The Living Archives Project spoke as well. Nicola Fairbrother, who interviewed the survivors, discussed the importance of taking personal testimony from people whose voices are typically silenced and devalued. Fairbrother’s work amplifies these voices and stories, both in the documentary and in the “Our Stories Told” section of the online Eugenics Archives. Living Archives member Justin Houle spoke about his work creating “Newgenics: The Game,” which aims to reach a younger demographic on the Archive’s webpage.
Both The Scope of Eugenics conference and the Eugenics Archives reflect the collaborative work of scholars, sterilization survivors, students, and university and community partners in challenging eugenics in a balanced and informative way. You can explore the online Archives’ ten tools, including personal narratives, the Newgenics game, timelines, and other visual representations, to learn more about the history of eugenics and to connect that legacy to our realities today.
Three white chicken eggs with smiley faces drawn on them peer out at me from a Facebook ad. (Notably, a Facebook ad forwarded to a listserv by a young woman in college, not one that popped up in my own middle-aged Facebook feed.) One of the smiling eggs exclaims, “Donate Me and Help Make a Family!”
Fifteen or twenty years ago, this ad would have made little sense. Donate a chicken egg to create a family? But in today’s brave new reproductive world, where in-vitro fertilization, commercial surrogacy, and sperm and egg donation are no longer obscure medical secrets but commonplace knowledge, it’s fairly obvious to most people viewing this ad that it is targeted at young women, encouraging them to “donate” their ova.
I put the word “donate” in quotes above because unlike kidneys, ova are not usually “donated” in this country. While it is illegal to offer economic compensation to people for other sorts of organ donation (due, rightfully, to the bioethical concern that this will create a market for human organs, and impoverished people will be unequally coerced into selling their body parts), getting paid for giving up your ova (and sperm) is perfectly legal in the U.S.
But why is it particularly worrisome that ads for ova donation have made it onto personalized Facebook feeds?
The Commodification of Women’s Bodies: Economic Coercion
Back when the only egg donation ads I saw were in the hallways of the Ivy League medical school in which I teach, I was equally concerned. Whether on digital or brick-and-mortar walls, ova donation ads make clear that women’s bodies and body parts are commodities to be bought and sold. Which of course begs the deeply troubling question — are women’s bodies things to be owned and traded on the open market?
Whatever a young woman’s opinion on bodily “ownership,” the economic inducement is so significant ($5,000–10,000, with higher fees going to donors with Ivy League educations, high IQs and preferred ethnic and racial features) that a young woman does not need to be in dire financial straits to feel tempted by the quick and supposedly easy money of egg donation. From medical bills to house payments to college and graduate school debts, young women use egg donation payments in myriad ways. And besides, you get to help someone, right?
Yet, the altruistic rhetoric of “helping create families” and “women helping women” only serves to distract us from the fact that ova donation is ultimately a booming business, and as such, it is about the money, honey. (Without the economic compensation, would many young women do it?) As of 2007, the assisted reproductive technology industry in the U.S. was a $6.5 billion for-profit industry, and growing. Fertility clinics and other middlemen are clearly invested in keeping this lucrative business going.
Lack of Transparency About Health Risks, and the Lack of Research
Unlike sperm donation, which has few to no health risks and indeed usually involves free porn, ova donation is a risky business. As a complex medical procedure involving hormones, injections, blood draws, anesthesia, and a surgical procedure to extract a body part, many things can go wrong with ova donation. The risks of egg donation include bleeding, pain, stroke, kidney disease, ovarian cysts, torsion, infertility, and even death. The Center for Bioethics and Culture argues,
OHSS (ovarian hyperstimulation syndrome) is caused by the process of superovulation and is well-documented in the medical literature as a risk associated with women who take fertility drugs to stimulate ovulation. It is also documented in the literature that young women are more at risk for OHSS.
These risks are not, however, freely shared with the young women donating their ova. Indeed, there is very little research being conducted, little data being gathered about the long-term health effects of ova donation — if donating ova earlier in life affects later-in-life fertility, cancer rates, or other diseases. And that, as the award-winning documentary film Eggsploitationsuggests, is the fertility industry’s “dirty little secret.”
Racist Elitism: A New Eugenics
“Make another woman’s dreams come true!” cried the advertisement I used to see (and systematically take down) on the walls of the medical school where I teach. The ad infuriated me not only due to how it signaled a commodification of women’s bodies, but also in its obviously racist, and elitist, implications. “Ivy League Donors Wanted,” read the subheading. The photograph in the advertisement was of a young, smiling blonde woman, clearly indicating that this was the kind of Ivy League–educated woman who was desired. In the words of an article from The Journal of Health Care Law,
Wealthy couples, who utilize egg brokers or high-profile advertisements, do not seek general traits. These couples are seeking a “perfect gene pool” for their commodity — notice the highly sought-after donor is a woman who has blonde hair, blue eyes, received a 1400 on her SAT, attends an Ivy League school, and who preferably has some additional talents such as music, sports, or theatre.
These perspectives make women with such highly desirable traits prized reproductive commodities, and clearly sends the broader social message to all women that we are only valued for our abilities to produce genetically favorable offspring. Interestingly, a more recent study indicates that this racially motivated preference may be changing, as couples using egg donors choose “brains” over perceived “beauty.” (Although I would argue it’s just a shift in what is seen as genetically “valuable.”) In the words of Robin Marantz Henig, writing at NPR’s health blog,
But as the practice [of using donated eggs] becomes more widespread, a recent study finds, women are no longer trying to hide the fact that their babies come from donor eggs by working hard to find donors who are physically or genetically similar to them. Instead, the researchers say, recipients tend to look for other qualities, such as intelligence and athletic ability, that they hope to pass on to their children.
Whether it’s shopping for blonde hair or brainiacs, the eugenic implications are still the same. These sorts of genetic preferences in choosing an egg donor are still part and parcel of the social pressure on people to produce “perfect” children genetically related to at least one parent. They are still part and parcel of a mentality which, for lack of a better word, is ultimately about “designer babies.”
The Surveillance Society: Facebook Algorithms See All
With all of these disturbing aspects of the ova donation industry in mind, the commodification of bodies, the eugenic tendencies, and the ill-explained or known health risks, the additional digital twist of the personalized Facebook ova ad is particularly disturbing. Like Big Brother or some dystopian fascist corporation from Blade Runner or Minority Report, Facebook algorithms see all — our age, gender, height, weight, ethnicity, and education — and make conclusions about the genetic desirability of our reproductive parts, our possible willingness or need to donate ova for compensation. As early as 2009, Jennifer Lahl, the president of the Center for Bioethics and Culture, was demanding that Facebook take down egg donor ads targeting young women. One blogger posted a critique of multiple aspects of the practice in 2011 called “Facebook Thinks I’m an Asian Egg Donor.”
Where to begin?? Let’s start with the copy:
“Asian Egg Donors Earn $8K”
I get that they’re trying to customize this ad somewhat to my ethnicity by putting “Asian” on there. But does this mean if I were of another race, that I would earn more or less? Does my ethnicity equate my monetary potential in this market of egg donors?
I’m assuming this company went about facebook [sic] targeting the same way a lot of us do — select from Facebook’s menu of options and then add some keywords. They probably entered some common Chinese/Japanese/whatever they think is “Asian names — and I guess my last name (which is a pretty popular Asian name) fit into the category they are targeting. However, I wonder if they considered the fact that I may be adopted, or that I may be half-Asian, or I married an Asian guy. But I guess this sort of crass targeting fits into their overall way of thinking …
Amongst the weight loss, cellulite reduction, online dating, and hair removal advertisements featured in the margins of my Facebook account, there have been an increasing amount of advertisements requesting college-age egg donors. With an alluring compensation of $100,000, I couldn’t help but click on the ad. The ad took me directly to a site called “Elite Donors: Creating Happy Families,” a site that recruits egg donors for infertile couples for the purpose of In Vitro Fertilization into the female client or surrogate. The site was plastered with photos of smiling babies and mothers, all with blonde hair, blue eyes, and perfect white teeth.
Intrigued to determine whether or not I have “elite” status, I searched their criteria for an eligible donor. The standards were as follows:
Height 5’9″ or taller: You may apply if you are shorter, but it helps to have family members who are 5’9″ or taller.
Caucasian: Check back in the future if you are a different heritage.
Very Attractive: Modeling experience is a plus, but not required.
Must be 18–28 years old.
Proven Intelligence: We are looking for a donor who has graduated from a top 100 four-year college.
Athletic Ability: Looking for a donor who has a history of participating in athletics or dance. Playing or performing at a college or professional level is ideal.
No Genetic Medical Issues: This criterion is absolute.
The writer goes on to wonder if with her history of braces, her less-than-4.0 grade point average, and her non-modeling / normal woman weight, her ability to earn might go down and down. She concludes, “I guess if these are the standards by which one measures women, we’re not worth a whole lot, are we? Be more than what someone is willing to pay for you: Protest egg donation advertisements on Facebook today.”
In the end, I agree with the writer above. It’s creepy enough that Facebook knows whether I am in the market for a new dentist or dining room table. It freaks me out infuriates me that the digital giant is also now in the business of luring young women into selling their body parts for profit. But as I wrote about recently in regard to Facebook offering to pay for female employees who want to freeze their ova, the corporate giant clearly thinks that women’s reproductive parts and wholes are part and parcel of their global purview. Facebook’s ova donation ads don’t signal a brave new world, just old exploitations packaged in slick, sophisticated, and frighteningly targeted digital packaging.
Sayantani DasGupta is an assistant clinical professor of pediatrics and a core faculty member of the Program in Narrative Medicine at Columbia University. She also teaches in the graduate program in Health Advocacy at Sarah Lawrence College, and is a prose faculty member in the summer writing conference Writing the Medical Experience at Sarah Lawrence College. Dr. DasGupta is co-author of The Demon Slayers and Other Stories: Bengali Folktales (1995), author of Her Own Medicine: A Woman's Journey from Student to Doctor (1999), and co-editor of Stories of Illness and Healing: Women Write Their Bodies (2007).
Posted by Jaydee Hanson, Biopolitical Times guest contributor on March 5th, 2015
Lawmakers in Virginia have agreed to pay compensation to people who were forcibly sterilized between 1927 and the early 1970s. The decision makes Virginia the second state after North Carolina – out of more than 30 with eugenic programs during the twentieth century – to provide restitution to those sterilized by their state governments.
Virginia passed its Eugenical Sterilization Act in 1924. Almost immediately, the Virginia Colony for the Epileptic and Feebleminded selected a test case that would allow other sterilizations to proceed: Carrie Buck, a 17-year-old young woman committed to the Colony by her foster parents after she gave birth to an illegitimate child conceived when she was raped by one of their relatives.
Buck’s court-appointed attorney called no witnesses to challenge the charges made about her mental health, or to question the science behind the eugenic theory espoused by so-called expert witnesses. The Amherst County Circuit Court quickly affirmed the sterilization law, as did the Virginia Supreme Court of Appeals. The Buck v. Bell case then went before the United States Supreme Court, which upheld it by a vote of 8 to 1 on May 2, 1927. In his opinion, Chief Justice Oliver Wendell Holmes, Jr. agreed with the “expert” witnesses at Buck’s original trial, asserting in a now infamous comment that “three generations of imbeciles are enough.”
A few months later, Carrie Buck became the first person in Virginia to be sterilized under the new law. Over the next 50 years, another 8,000 persons were sterilized in six Virginia facilities. Two thirds were women, most of them poor or African American.
Some 63,000 people were subsequently sterilized in similar programs across the US, more than 20,000 in California alone. The Virginia state program is also considered to have provided a model for other nations, including Nazi Germany.
During the late 1800s and early 1900s, eugenics was widely considered “good science” and “good religion,” and many US organizations and educated elites were strong advocates of eugenic laws. Today, few of these organizations have acknowledged or repented for their past support. Most Protestant denominations participated in the religion committee of the American Eugenic Society, but to my knowledge, only the United Methodist Church has formally apologized.
Virginia’s eugenic sterilization law was revoked in 1979. It has taken 35 years for the state to decide to provide financial reparations for its victims, each of whom will receive $25,000. Sadly, many have died since 1979; it is estimated that fewer than 20 may still be alive, and the whereabouts of only 11 are known.
The compensation effort united liberals and conservatives in the state. The conservative Christian Law Institute was joined by the liberal United Methodist Church and by my organization, the International Center for Technology Assessment, in advocating for the payments. The compensation measure was sponsored by Delegate Ben Cline, a conservative Republican from Rockbridge County, and Patrick Hope, a liberal Democrat from Arlington County who happens to be my delegate.
The bill originally would have granted $50,000 to each person sterilized under Virginia’s program, the amount provided by North Carolina. But fiscal conservatives balked, and the sponsors agreed to the lower amount in order to get the bill passed now. In the past year, two more of those sterilized by the state’s program have died, so the $400,000 appropriated will likely be more than enough for all the surviving victims of this sad chapter in Virginia’s history.
Posted by Pete Shanks, Jessica Cussins & Marcy Darnovsky on December 19th, 2014
2014 has been another busy, and decidedly mixed, year in biopolitics.
Some technical advances suggest that gene therapies and genomics-based personalized medicine may be coming closer, while a few advocates seize on the same news to speculate about making irreversible, dangerous, and socially pernicious changes to the human genome.
The need for regulation of new human biotechnologies became both more obvious and more widely accepted this year, but simultaneously there were efforts (which may succeed in the UK) to shatter long-accepted norms by allowing a form of inheritable genetic modification based on nuclear genome transfer techniques.
Other biopolitical developments also abounded, from commercial surrogacy, egg freezing parties and early-pregnancy fetal gene tests, to police DNA databases and resurgent claims about race as biology. These and yet more new biotech products and practices bring us ever closer to unprecedented personal and societal dilemmas and decisions.
The Center for Genetics and Society (CGS) continues to monitor all of these developments, and attempts to encourage their responsible usage and effective societal governance. Many of the following issues inevitably blend into each other, but here is a brief overview of the most important biopolitical developments of 2014, roughly grouped by topic:
A number of countries grappled with how to regulate surrogacy in 2014. Ireland published draft surrogacy legislation in February; Toronto saw a boom in surrogacy despite it being only semi-legal; India took further steps to determine how to regulate its huge surrogacy market.
International surrogacy arrangements came under increasing media scrutiny, including a three-part front-page series in The New York Times (1, 2, 3). And numerous surrogacy scandals surfaced. The high-profile surrogacy broker Planet Hospital was outed for scamming would-be parents who thought they were arranging contract pregnancies in Mexico. An Australian couple left their son (Baby Gammy) who has Down syndrome with his Thai surrogate mother, taking only his twin sister back home with them. The surrogate agreed to care for the child and was able to crowd-fund the costs of his needed medical treatment.
Shockingly, it was then discovered that the babies’ father has been convicted of 22 child sex offenses in Australia. Soon after, it was revealed that a 24-year-old Japanese businessman had fathered 14 babies with different Thai surrogates, and that a different Australian father of Thai surrogate twin girls was charged with sexually abusing them. These much-publicized outrages led Thailand’s Parliament to approve a bill banning all commercial surrogacy in the country.
The news about Baby Gammy prompted others around the world (San Francisco and England) to share similar experiences, and increased awareness about the need to consider the “best interests of the child” in international surrogacy arrangements. The European Court of Human Rights, meanwhile, ruled that France must officially recognize the legal parentage of children in two families who were conceived with their fathers’ sperm and third-party eggs, and carried and delivered by surrogates in California and in Minnesota.
The Center for Genetics and Society co-organized a three-day landmark international forum on international commercial surrogacy in the Netherlands to help inform the work of the Hague Convention on Private International Law, as its member states consider moving forward toward an international agreement on international surrogacy.
CGS and Our Bodies Ourselves were awarded a two-year grant by the MacArthur Foundation to investigate human rights and social justice concerns about cross-border surrogacy and commercial egg retrieval.
A 23-year-old Indian woman died after an egg harvesting procedure at an IVF clinic in Lajpat Nagar, which put the spotlight on the unregulated egg industry in India. In Canada, an investigative program learned that some clinics are helping couples circumvent the law to pay egg providers. In China, an underground market in women’s eggs is booming.
Facebook and Apple announced a $20,000 benefit for their female employees toward elective egg freezing. The move triggered a backlash, with critiques pointing to the serious and under-studied health risks to women and children, and concerns about increased workplace pressures for women to postpone childbearing.
Births from IVF hit a new high in 2014. But the year also saw increased awareness of failure rates. Following on last year’s Cracked Open: Liberty, Fertility, and the Pursuit of High-Tech Babies by Miriam Zoll, this year saw the publication of The Big Lie: Motherhood, Feminism, and the Reality of the Biological Clock, and articles about murky data from the fertility industry. A study of 300,000 births found that IVF babies have a slightly greater risk of complications and a study of donor egg pregnancies revealed that those carry higher complication rates. A review of many studies of IVF’s health impacts on women and children led some European researchers to suggest we should cut back on its use; multiple medical associations also pushed for elective single embryo transfers to reduce risks.
The trend towards openness in donor conception continued, with Australia ordering clinics to release anonymous sperm donor information so children can learn about their genetic origins. The American Society for Reproductive Medicine updated its guidelines for gamete donation in the light of the growing recognition that offspring may have a right to know their genetic parents.
A Calgary fertility clinic came under fire for refusing to treat a woman who wanted to use sperm that did not match her ethnic background because of its policy against creating “rainbow families.” In October, it was revealed that a white Ohio woman was suing her sperm bank, alleging that the company mistakenly gave her vials from an African-American donor. This news prompted discussion about the role of race in donor conception, and about the lack of regulation of sperm banks.
The first baby was born in Sweden following a womb-transplant.
In February, a study found that “noninvasive prenatal testing” – a procedure that analyzes fetal DNA found in women’s blood very early in pregnancy – is more accurate in detecting Down syndrome and other chromosomal disorders than a blood test and ultrasound screening. But this week, the New England Center for Investigative Reporting published a report showing the tests to be much less accurate than companies have led women and doctors to believe.
As genetic testing of embryos and fetuses increased this year, questions about ethical issues were raised in The New York Times and CNN, and parents of kids with conditions “on the list” spoke out about the risk of dehumanization. Heavy marketing of the early prenatal gene tests continued as profits rose, with the addition of microdeletions to the conditions detected, and an attempt to use the new tests in all pregnancies rather than those with specific risks. An undercover assessment of five early prenatal gene test labs found a need for better quality control. A clinical trial found that when pregnant women are educated about their choices on prenatal genetic testing, the number of tests actually drops.
Meanwhile, the US grew as a destination for couples opting to use IVF and PGD purely to choose the sex of their child (with only minimal pushback). In the UK, sex-selective abortion was made illegal with bipartisan support. UN Women produced a report showing that in India, the sharply declining child sex ratio has reached emergency proportions. In the US, dozens of right-wing bans on sex-selective abortion were introduced in a number of states and in Congress, with seven states enacting bans; a report by abortion rights supporters identified six major inaccuracies in their claims and made it clear that they are meant to undermine abortion rights.
The FDA public meeting to discuss 3-person IVF or nuclear genome transfer (which it termed “oocyte modification”) took place February 25-26. CGS sent the committee its own letter, as well as a sign-on letter with more than 250 signatures; CGS’s Marcy Darnovsky testified at the meeting and wrote a commentary on the issues for The New York Times. The FDA’s panel of experts discussed many safety and efficacy concerns, heard from members of the public about social and ethical matters, and concluded on a cautionary note, saying that it could take decades to confirm the safety of the experimental technique.
Nonetheless, the very next day the UK government issued proposed regulations (including numerous misrepresentations and concerning proposals) that would allow researchers to use the techniques in fertility clinics. The House of Commons debated the issue on September 1, and the Parliament’s Science and Technology Committee held an evidence hearing on October 22; 75% of submissions they received warned that more evidence is needed prior to offering these techniques.
Studies published in 2014 provided increasing evidence that mitochondria do impact a person’s phenotype and that the analogy between manipulating mitochondria in an egg or embryo and “changing a battery in a camera” is highly misleading, despite claims by proponents.
In August, the US fertility clinic that 15 years ago used a precursor of the controversial techniques now in question (which they termed “cytoplasmic transfer”) finally launched an investigation into the health of 17 children, now teenagers, who were born as a result.
The prohibition against making heritable (germline) changes to human genes came under serious threat in 2014. Inheritable human genetic modification is still explicitly illegal in dozens of countries, and nowhere is it explicitly allowed (but see “3-person IVF,” above). However, its advocates were increasingly vocal this year, perhaps encouraged by experiments that altered the genetic makeup of monkey embryos.
The Chinese company BGI continued its quest for a “better baby,” partly documented in the movie DNA Dreams. Opinions about the ethics of such a move varied (1, 2, 3) and CGS’s Marcy Darnovsky debated them with Nita Farahany at The Aspen Institute in July. In September, Israeli historian Yuval Noah Harari made a compelling case that “body upgrades” for the rich would contribute to rising inequality.
Eugenics is not merely a threat, nor is its history entirely in the past. North Carolina finally compensated its victims of eugenic sterilizations, becoming the first US state to do so. In California, Gov. Jerry Brown signed SB 1135 into law, providing protection against the kind of sterilization abuses in California prisons that were revealed last year by the prison rights group Justice Now and an investigation by the Center for Investigative Reporting.
Meanwhile, Lee Silver launched a company called GenePeeks that uses the DNA of sperm donors and recipients to create "virtual babies" with desirable traits.
Lord Robert Winston warned us all that breakthroughs in IVF could prompt parents to demand particular traits for their babies. One father asked, “Will my disabled daughter have a place in this genetic wonderland?”
Almost all former direct-to-consumer genetic testing companies have closed up shop, and public trust in personalized medicine was threatened this year by 23andMe’s failure to comply with FDA standards, as well as the difference between the company’s rhetoric of personal control and its actual business plan.
Its ancestry testing also came under criticism after stories emerged about revelations of previously unknown sibling relationships that wound up tearing families apart. However, 23andMe is now selling its tests (with health information) in Canada and the UK, and there are ways of accessing the data in the US if you really want to.
Additionally, the Federal Trade Commission charged GeneLink, which served 30,000 customers, for making claims not based on science and for failing to protect consumer information. Concrete evidence emerged about errors in test interpretation by a DTC company causing potential harm.
The long-awaited $1,000 genome was announced by Illumina in February with help from the US government, though that price tag ignored substantial hidden costs. Craig Venter formed another company, Human Longevity Inc., to exploit this technology, with the goal of sequencing half a million human genomes within five years.
Myriad Genetics continues to wage legal battles over its BRCA gene patents in the US; surprisingly, Australia chose to uphold Myriad’s patents in September. Meanwhile, it was discovered that mutations in a gene called PALB2 also greatly increase the risk of breast cancer. Breast cancer patient advocates warned that genetic testing of all women would not provide a solution to the breast cancer epidemic.
New studies suggest that doctors need to be more cautious when they release genetic information to patients, and the American College of Medical Genetics and Genomics now claims that patients should be allowed to “opt out” of learning how their DNA might increase their risk of disease.
Some people are avoiding genetic testing because of major omissions in protection offered by GINA — life, disability and long-term care insurance — that are especially important to people who may have serious inherited diseases. The Council for Responsible Genetics released a report on “Genetic Privacy and Non-Forensic Biobanks” outlining the need for regulatory reform.
Efforts to ease data sharing of genomic information ramped up around the world. Google set up a cloud to allow people to import, process, store and search DNA data, and joined forces with The Global Alliance; Kaiser Permanente now has a genetic database with information from over 210,000 of its members.
Examples of genetic determinismabounded, from Uzbekistan testing children as young as ten years old to determine their athletic potential, to former New York Times reporter Nicholas Wade arguing in a new book that genetic variation between races could underlie global economic, political and social differences.
A major focus of technological enthusiasm was synthetic biology. Most public attention went to powerful new gene editing technologies, notably CRISPR, but scientists also produced synthetic chromosomes and artificial nucleotides.
One of the most potentially consequential technologies being seriously discussed is the “gene drive,” which involves altering genes and then deliberately spreading the new version through the entire population of a species. Unusually, scientists published a technical paper about it and simultaneously another about the need to regulate this technology, accompanied by an informative blog post.
Regulation of synthetic biology in general was much in the air. The United Nation’s Convention on Biological Diversity called for it, and an event at Arizona State University raised the issue, but the discussion has barely started.
An FBI audit of a national DNA database found nearly 170 profiles that probably contain errors, and New York authorities turned up mistakes in their state's DNA database. Meanwhile, DNA contamination was shown once again to be a sizeable problem.
Privacy advocates warned that warrantless searches of a person’s DNA, especially for misdemeanor arrests, is a slippery slope. “DNA sweeps” were shown to be particularly troubling, as was the rise in familial DNA searches.
In March, a federal appeals court upheld California's law requiring people arrested for felonies — though not necessarily convicted or even charged — to submit samples of their DNA to police. But in December, an appeals court decided unanimously that the practice violates the state constitution.
However, the FBI is preparing to accelerate the collection of DNA profiles for the government's massive new biometric identification database, and is hoping to use a machine that can scan your DNA in just 90 minutes. Some argue that we are facing a backdoor move into total population surveillance by both governments and companies.
The biggest story of the year turned out to be a bust: so-called STAP cells were presented in January as a paradigm changer — an easily obtainable alternative to embryonic stem cells (ESCs) and induced pluripotent stem cells (iPSCs). By July, however, Nature had retracted the relevant papers and almost everyone has now given up on the process.
Two additional research teams produced ESCs by nuclear transfer or cloning (NT-ESCs) after the first success in 2013, reinforcing concerns about the risks to women who would provide the needed eggs and about inadequate laws against human reproductive cloning. To the researchers’ surprise, however, and despite initial reports, iPSCs turned out on analysis to be just as good as NT-ESCs, though studies will continue on both methods.
Stem cells are moving into clinical trials, mostly with adult stem cells but also the first iPSC-based trial. However, premature commercialization of the technology continues, and drew increasing criticism (1, 2, 3, 4); professional athletes are frequently lured to dubious clinics.
The California Institute for Regenerative Medicine (CIRM) survived a rocky year. A conflict-of-interest scandal involving its recently departed President, Alan Trounson, brought unwelcome publicity. The 10th anniversary of its founding prompted a look back that was compelled to note that no cures have reached the clinic, or even come close. But at year’s end the new management launched a new effort to produce treatments, in what could be CIRM’s last gasp before its public money runs out.
Even without the technical advances promised by synthetic biology (see above), the historically troubled field of gene therapy made significant progress in 2014. It was announced that eight of nine “bubble boys” had survived for up to 43 months (so far) after treatment. Advanced Cell Technology’s stem-cell therapy for eye disease seems to be at least safe and possibly effective; the company has just changed its name to Ocata Therapeutics, Inc.
The ESC-based spinal cord treatment program that Geron let go for business reasons has been revived. Asterias, a subsidiary of BioTime, took over the project and received a $14.3-million grant from CIRM to proceed. The company also says it is working on a potential ESC-based treatment for lung cancer.
In Germany, the first gene therapy drug has been announced, with a record price tag of €1.1 million ($1.4 million). But it won’t go on sale until 2015.
As many of you know, NIPT is a new technology that promises to detect Down syndrome and other chromosomal conditions based on a maternal blood draw alone. These tests are sold as "99% accurate" – something I believed for a long time, and that some health professionals seem to believe – but as genetic counselor Katie Stoll has written, the actual test performance is nowhere near as good. NIPT is not diagnostic; it is a screening test, and a "positive" result only means that a diagnostic procedure, like amniocentesis or CVS, will be required to confirm fetal status.
I believe that it is not enough to consider reproductive technologies in the abstract. They cannot be contemplated only in a statistical or bioethical vacuum: we need fact-based stories to perceive human consequences on the ground. Beth's article accomplishes this by focusing on the cost of false positives and false negatives in real people. She also delves into the facts about LDTs, or laboratory-developed tests, which are currently unregulated by the FDA. Because her article has already sparked pieces at The New York Times, NBC News, and elsewhere, I have hopes that a new conversation is beginning.
I very much hope that disability will be a part of that conversation. In an online chat that accompanied the article launch, the main conversation focused on the accuracy of marketing claims and the consequences for women. These are vital and relevant issues, but they aren't the only ones. We also need to question what we test for, and why – and the way "objective" tests project human values into the world. Ultimately, I think NIPT needs to be seen in the context of a rapidly increasing power to read and alter our genetic code.
One key part of Beth's report is that it shifts the ground of discussion. Though questions about NIPT often get subsumed under discussions of abortion – an idea encouraged by the Globe's headline– Beth's article makes clear that other questions, from corporate responsibility to loopholes in regulation to gaps in practitioner understanding, are also at issue.
George Estreich received his M.F.A. in poetry from Cornell University. His first book, a collection of poems entitled Textbook Illustrations of the Human Body, won the Gorsline Prize from Cloudbank Books. His memoir about raising a daughter with Down syndrome, The Shape of the Eye, was published in SMU Press’ Medical Humanities Series. Praised by Abraham Verghese as “a poignant, beautifully written, and intensely moving memoir,” The Shape of the Eye was awarded the 2012 Oregon Book Award in Creative Nonfiction. Estreich lives in Oregon with his family.
In an historic recognition of the horrors of the United States’ state-sponsored eugenics programs during the twentieth century, North Carolina has now begun sending compensation payments to some of its 7,000 sterilization victims. Unfortunately, as NPR has covered, the new policy will lose some people through bureaucratic cracks.
Nonetheless, the importance of this moment for those who have been fighting for recognition of this abuse of reproductive justice and human rights cannot be overstated. It has been a long struggle to get to this point.
Twentieth-century eugenics in the US is often systematically ignored. This year, some important efforts have shed light on how it was that many of the most respected members of society promoted these (profoundly discriminatory) practices. New York University’s new exhibit, Haunted Files: The Eugenics Record Office, which will run until March, is an important one.
The recognition of this history is timely because advances in genetic and reproductive technologies will put increasingly more people in the position of having to wrestle with questions about the kind of child they want – and don’t want – to bring into the world. For example, the start-up company GenePeeks brings us what enthusiasts call “virtual eugenics” by encouraging “best matches” of gametes.
Forbes ran an article over the weekend called “Could Genomics Revive The Eugenics Movement?” Its short answer was, yes, and given our history, we should be really concerned.
Of course, some people would rather ignore these connections. In a twist of particularly cruel irony, Jon Entine published a piece in The Huffington Post called “Let's (Cautiously) Celebrate the `New Eugenics’” on the exact same day that the eugenic victims of North Carolina were finally beginning to be compensated for their loss.
Entine’s argument is along the lines that individual choices absolve us of eugenic implications. But one only need look at the 163 million missing girls in Asia or the over 90% termination rate following a prenatal diagnosis of Down syndrome, to see that this is naïve. Choices about families can never be strictly individual; we are all subject to social and political realities.
Now is not the time to celebrate eugenics (cautiously or otherwise), but to finally learn about the toll that our pseudoscientific eugenic laws had on people’s lives and on society, so that we are not endlessly condemned to repetition.
FIXED questions commonly held beliefs about disability and normalcy by exploring technologies that promise to change our bodies and mind forever. The film follows five people with disabilities and explores the implications new human enhancing technologies have on them.
Clark Miller, Associate Director of the Consortium for Science, Policy and Outcomes at ASU, raved about its interdisciplinary importance for students and faculty,
This film is extremely important and will be very valuable for faculty from dozens of different disciplines from the biological sciences to disability studies to the humanities and social sciences, precisely because it confronts one of the central issues of our time: how to make sense of variations among human beings and how to make sense of our capacity for radical technological innovation that will change our entire futures.
Brashear has been in touch with CGS since the beginning of production, and the documentary features CGS Executive Director Marcy Darnovsky sharing her concern about the potential misuses of new and emerging human biotechnologies.
FIXED is a great film for promoting discussion about the profound implications of new technologies on the lives of people with – and without – disabilities. It's wonderful to see it getting so much well-deserved attention. To learn more about the film, watch the trailer, or buy a copy, see more here.
Posted by Jonathan Chernoguz on October 28th, 2014
Source: Miles Cole
This month, New York University and University College London have both launched initiatives to focus on the history of eugenics. Students and faculty at UCL hosted an event to encourage their institution to face up to its complicity in constructing unjust racial hierarchy through its support of Francis Galton’s research on eugenics. At NYU, a new exhibit, “Haunted Files: The Eugenics Record Office,” opened at the university’s Asian/Pacific/American Institute.
At both universities, these initiatives acknowledge that advances in modern genetic technologies make education about the history of eugenics increasingly important.
Galton’s legacy at UCL is extensive. It began 110 years ago this month, when he contributed funds to establish a position there for a “research fellow” in “National Eugenics,” which he defined as “the study of the agencies under social control that may improve or impair the racial qualities of future generations either physically or mentally.”
The NYU exhibit brings to life the physical offices and paper archives of Cold Spring Harbor Laboratory on Long Island, the center of the eugenics movement in the United States between 1910 and 1939. According to The New York Times, the exhibit’s curators relied heavily on Cold Spring Harbor’s online Image Archive on the American Eugenics Movement:
David Micklos, executive director of the laboratory’s DNA Learning Center, applied for a government grant to scan files from the office and display them in an online archive, which opened in 2000. “It was a hidden part of American scientific history — people didn’t like to talk about it,” said Mr. Micklos, who added that he was inspired by ethical concerns surrounding the Human Genome Project.
Many educational institutions still avoid discussing the history of eugenics, and many are reluctant to confront their own complicity in the abuses it facilitated. But studying eugenics in the twentieth century is important not just as a matter of learning history, but as part of what we need to know in order to thoughtfully consider the responsible uses of genetic technologies today.
California Governor Jerry Brown signed SB 1135 into law Thursday night, banning unnecessary coercive sterilizations in the state's prisons - a happy victory for advocates of reproductive and criminal justice as well as of human and women’s rights.
The bill’s sponsor, Sen. Hannah-Beth Jackson (D), identified the need for the change:
Pressuring a vulnerable population into making permanent reproductive choices without informed consent is unacceptable, and violates our most basic human rights.
The bill was inspired by the efforts of Justice Now, an advocacy organization working to challenge the prison industrial complex, which originally uncovered evidence of these abuses and started a petition last year to demand that they end, as well as by the important journalism of Corey Johnson of the Center for Investigative Reporting, who documented evidence of 148 illegal sterilizations taking place in California prisons between 2006 and 2010.
California bears the shameful history of having sterilized more people under 20th century eugenic laws than any other state. Over 20,000 people lost their reproductive rights because the state considered them “unfit” to reproduce. These laws disproportionately impacted communities of color, people with disabilities, and people living in poverty. It is critical to know this history so that problematic resurgences of these same ideologies do not creep back under new auspices. SB 1135 is an important victory in the fight for the remembrance of our eugenic history and its ongoing implications.
We are absolutely thrilled to see this policy become law. Thank you, Jerry Brown!
Posted by Victoria Massie, Biopolitical Times guest contributor on August 21st, 2014
On Friday, August 15th, I was one among a multitude of people finding a seat in Booth Auditorium at UC Berkeley Law School for Celebrating Troy Duster. But the event turned out to be as much a family reunion as a celebration, a testament to the work done by organizers Osagie Obasogie and Duana Fullwiley.
For the sake of formalities, there was an agenda, and panels throughout the day pointed to themes that have been central to Troy’s work: the “slippery slopes” of political inclusion and racial science around understanding health disparities; the technique of engaging scientists on race in genetic research; the work of the sociologist in policing, forensics, and behavioral science; and lastly “connecting the dots” between Troy’s work in the academy and his commitment to the public and community engagement. But with each panelist’s approach to the podium, it became increasingly undeniable that every reference to the “Dusterian”—after all, Ruha Benjamin pointed out, we have “Bourdieuian”—analytical method of recontextualizing in context, of noting the pre-frame, was inextricably tied to the love and care infused and cultivated in each of their relationships with the man of the day.
I first met Troy Duster in Rochester, NY in the summer of 2009. I had just finished my sophomore year of college, and was beginning to research the various social ties entangled within the genetic ancestry testing results my dad had sent me eight months earlier. Make no mistake, I found my father’s test results to be a godsend. Although I came to the University of Rochester with the sole purpose of pursuing a molecular genetics major, I quickly found my passion for the double helix in jeopardy during my first semester when I was introduced to anthropology, and specifically the lecture on how race is socially constructed. It was an idea that was new and yet so familiar as I found myself finally able to put my lived experiences into words. I came to learn that all the times I found myself being denied the full potential of my identity as a black woman had less to do with my inadequacies of being able to fit into a box and more to do with the conditions that make such a box possible. Intoxicated by the first taste of this form of self-aware liberation, I yelled to my friends as we met for lunch “Race doesn’t exist!” Full with hunger and anxious to beat the noon rush at our favorite dining hall, they began to resist my statement, only to find the refusal to surrender to my adamant assertion futile in reaching our ultimate goal: eating.
Over time, I would learn that neither my friends nor I had managed to get race right. When my father surprised me with an email containing the results of an ancestry test he had taken for himself, I found myself confronted with the context I had left out at lunch. Specifically, I began recognizing that saying race does not exist does not change the way race comes to matter. In the attempt to piece together the silences inherited by those whose ancestors’ personhood was considered property, my father extended to me information of a home we weren’t supposed to know. But even this new form of knowing was one I met with skepticism. It bridged together my love for DNA and my interests in race, but in ways that provided more questions than answers, so much so that I could spend a summer researching them in 2009. And having been lucky enough to have had an advisor who did her Ph.D. at NYU, I was immediately pointed to Troy’s work.
Five years later, having just finished my qualifying exam in the anthropology department at Berkeley, and preparing for my upcoming year and a half of fieldwork for the same project, I am still indebted to my first meeting with Troy’s work in Rochester. And as I sat in Booth Auditorium, listening to the countless scholars who Troy influenced and who have also influenced me, I couldn’t help but be in awe and at home at the same time. People from across the country came together to celebrate the many ways Troy seemed to simultaneously embody and exceed the title of scholar, activist, teacher and friend, but with a swagger-infused humility not easily mirrored but always inspiring us with the everyday challenge to try.
The sad saga of Nicholas Wade, former international reporter turned laughing stock, seems to be staggering toward its inevitable end. However, the issues that he — unintentionally — highlighted remain, and badly need to be addressed.
Wade's fatuous book, A Troublesome Inheritance: Genes, Race and Human History (see 1, 2), has drawn what surely must be the definitive response from, at last count, 143 population geneticists. Essentially (to quote Marshall McLuhan, as scripted by Woody Allen) they each say:
You know nothing of my work.
The scientists published a short letter in The New York Times Book Review on August 8, commending the July 10th review of Wade's book by David Dobbs and thanking Dobbs "for his description of Wade's misappropriation of research from our field to support arguments about differences among human societies." The letter notes that:
Wade juxtaposes an incomplete and inaccurate account of our research on human genetic differences with speculation that recent natural selection has led to worldwide differences in I.Q. test results, political institutions and economic development. We reject Wade's implication that our findings substantiate his guesswork. They do not.
We are in full agreement that there is no support from the field of population genetics for Wade's conjectures.
The letter was noticed in various corners of the press, including the Los Angeles Times and the [London] Independent, as well as the news pages of Nature and Science. Some of the readers' comments in Science are a source of grim humor if you are so inclined.
Wade is not backing down. In a response [pdf, here or here], he accuses his critics of being "driven by politics, not science" and claims to have "seen no basis" for the "repeated assertions that the book is scientifically inaccurate."
This is rubbish. Wade did seem to have a poor connection when discussing the book with Agustin Fuentes on May 5; perhaps he failed to hear everything that was said. Perhaps he did not read the reviews by credentialed scientists from several disciplines with the care and attention they deserve (for instance, 1, 2, 3, 4, 5); perhaps, like a child afraid of the wicked witch, he closed his eyes and skipped over the ugly parts. Or perhaps he is so convinced of his own unique insight that mere facts bounce off the carapace that protects his prejudices.
Whatever the reason, Wade (who still insists that he opposes racism on principle) seems desperate to engage with his critics. But they are right to refuse: He claims to correct them in their own field, and he is wrong. There is no further debate to be had with one who will not learn.
There is, however, a continuing and even growing need to have a series of related discussions, which should involve both academics of many specialities and the public in general, at all levels of formal and informal education. Population geneticists and anthropologists may be quite clear about the fallacies that surrounded the subjects of race and genetics, but it is equally obvious that some psychologists and physicists are not. Some Americans may blithely insist that we live in a post-racial society; most of us know better.
Sticking strictly to fields directly connected with genetics, racial fallacies and simplistic interpretations of inadequate data have been — are being — used in attempts to sell race-based medicine, for instance, as well as relatively trivial ancestry scams. Race-based forensic applications of technology, biased databases, even advocacy of predictive sentencing, need to be addressed, critiqued, corrected and discarded. The social construction of race needs to be addressed at social, cultural and political levels.
Cherry-picking from scientific papers to misrepresent their conclusions in order to bolster prejudice must not be allowed to continue.
That is the big lesson to be drawn from Wade's experience.
Personalized medicine may, eventually, have an important role to play in society. If and when it does, the differential distribution of alleles between populations is not really going to be vital: what will matter is that a given patient has a given allele, and whether it is rare or common in a particular geographic or cultural milieu will largely be irrelevant (except for effects of the external environment).
But it's going to take both a lot of research and a lot of discussion to reach that point. If Wade's hasty grab for the spotlight helped to make that clear, then something useful came of it. Perhaps it can yet be the start of an important discussion.
Posted by Victoria Massie, Biopolitical Times guest contributor on August 7th, 2014
Elaine Riddick is one of North Carolina's sterilization survivors
Willis Lynch says the nurse asked him to sing her a song as she slipped the mask over his face. It was the serenade of lifetime, but it would be years before Lynch learned that this song slipped him into cutting the ties that could bind him to a future generation of his making.
In 1947, at the age of 14, Lynch was one of an estimated 76,000 people who were forcibly sterilized through the state of North Carolina’s selective sterilization program, which ran from 1929 to 1974. It was a program that, according to pamphlets, aimed to protect the broader state’s citizenry from the burdens imposed by those it identified as “moron,” “feebleminded,” “(mental) defectives,” and/or “a person of little intelligence.”
These categories allowed the state to codify and target the sterilization of those who did not fit its profile of an ideal citizen: the poor, people of color, people with disabilities, and even victims of rape who became pregnant. The assumption was that all citizens had a duty to protect the parenting of “a healthy, normal baby,” and that those targeted for sterilization should voluntarily give up their reproductive rights.
In reality, people often found themselves forced to choose between being released from state institutions and receiving welfare benefits, or losing their right and their ability to have children. Under the sterilization program, voluntary surrender was a cover for an insidious ultimatum. In other words, North Carolina – like more than 30 other states with laws allowing eugenic sterilization – found it more efficient to deny the possibility of future generations to certain people, rather than attend to the structural, socioeconomic and political issues that make poverty, racism and rape not only possible but normal.
North Carolina’s history of sterilization has come to the surface this summer as the state began accepting claims from those who were involuntarily sterilized. This step toward offering compensation to victims and their families made North Carolina the first state in the country to do so.
And yet in spite of this major symbolic victory, Lynch’s all-too familiar song lingers, harmonized now to the tune of Kannapolis citizenry turned into human research subjects in the name of bio-banking.
“Sequenced in the U.S.A.”
Located on the outskirts of Charlotte, Kannapolis was a town once known as the largest towel manufacturer in the world. Most of those who lived in Kannapolis depended on Cannon Mill as the linchpin of the local economy. But a little over a decade ago, the town experienced the largest single layoff in the state’s history as the mill’s doors were permanently closed.
Since then, Kannapolis has become a hub for biotech research and innovation, in part due to a billion-dollar investment by Los Angeles real estate magnate and businessman David H. Murdock. According to a revealing article in The Pacific Standardcalled “Sequenced in the U.S.A.: A Desperate Town Hands Over Its DNA,” Murcock “stepped in to transform Kannapolis into a $1 billion mecca for biotechnology and life sciences research,” building a 350-acre research complex on the site of the demolished Cannon Mills.
The town’s former blue-collar laborers aren’t the kind of people who will find jobs at Murdoch’s high-tech institute. But they now find themselves bombarded with “opportunities” to provide urine and blood samples for its research efforts, including one called the MURDOCK Study. At schools, churches, and health care facilities, there is a very high likelihood that recruiters will be waiting under a tent to collect local biological material so that researchers can connect family histories to genetic sequences in the pursuit of personalized medicine.
But despite the fact that the local raw material may help biotech ventures make billions of dollars, guess how participants are compensated: a $10 gift card to WalMart.
The argument can be made that participants are at least getting some form of compensation for their contributions to the study, and some told the Pacific Standard that they are taking part in the study “for the good of their grandchildren and future generations.” But questions remain.
Can one consider consent to be informed when Kannapolites are being invited to relinquish their biological material for use in a future that has yet to come and may never come to pass, that cannot be predicted, and that is only as speculative as the venture capital supporting the biotech industry? Shouldn’t we be given pause by the legacy of Henrietta Lacks, an African American woman whose cells were taken without her consent to produce the first known human immortal cell line for medical research?
According to international consensus, research subjects are to be expected to know the “nature, duration, and purpose” of experiments in which they take part. The MURDOCK study has no temporal end in sight, and the nature of the projected research has yet to be made clear. The assumed public good may turn out to be one that much of the public cannot share.
Despite assurances by researchers that participants can withdraw from the study at any time, once blood and urine is taken, the material and information is out of their control. Participants are informed that they can make no claims to the benefits of the commercial products that may be made possible by the biological materials and information they provide.
The state of North Carolina once promoted eugenic sterilization as a technique to protect the public. Today, it hosts private-public a biotech industry effort to build lucrative biobank-based ventures. Are there similarities to which we should be paying attention?
Victoria Massie is currently a graduate student at UC Berkeley, pursuing a Ph.D. in Sociocultural Anthropology with a designated emphasis in Science & Technology Studies. Her research examines the transnational circulation of genetic ancestry testing information by African-Americans, particularly between (but not exclusive to) the United States, Cameroon, and Sierra Leone. She is also a poet, and a summer intern at the Center for Genetics and Society.
Last month, the California Senate unanimously approved bill 1135, which bans the sterilization of inmates as a form of birth control. The bill will soon be put before the Assembly and could become state law this year. If it passes and is signed by the Governor, the sterilization of prison inmates will be permitted only in cases of life threatening emergencies or when medically necessary.
Evidence of unauthorized sterilizations in California prisons emerged through the persistent efforts of Justice Now and an extensive investigation by Corey Johnson of the Center for Investigative Reporting. State Senator Hannah-Beth Jackson, vice-chair of the California Legislative Women’s Caucus, spearheaded the request for a state audit and authored SB 1135.
According to the California State Auditor, more than 39 out of the 144 bilateral tubal ligations performed on inmates from fiscal years 2005-06 to 2012-13 were done without lawful consent. Even more alarming, there is no evidence that the inmates’ physician signed the required consent form for 27 of the sterilization procedures.
The audit additionally says that “the true number of cases in which Corrections or the Receiver’s Office did not ensure that consent was lawfully obtained prior to sterilization may be higher.” In other words, there could be even more victims of sterilizations who are unaccounted for because they are still unaware that the procedure was performed.
With the SB 1135 approved unanimously and on its way to the Assembly, it’s easy to forget about California's murky history with sterilizations. During the twentieth century, dozens of U.S. states had laws permitting explicitly eugenic sterilization. Some 20,000 procedures were performed between 1909 and 1963 in California, the highest number in any state.
This history was raised in the legislature in 2003. Governor Gray Davis issued an apology, and a state resolution was passed that
urges every citizen of the state to become familiar with the history of the eugenics movement, in the hope that a more educated and tolerant populace will reject any similar abhorrent pseudoscientific movement should it arise in the future.
Yet the resolution presents no outline for making this idealistic “urging” a reality.
When I learned of the continuing sterilizations in California, it seemed to me that the 2003 apology and resolution were empty. As an effort to truly help prevent “any similar abhorrent pseudoscientific movement to arise,” I worked on a petition to incorporate the history of the eugenics movement into California schools’ curricula. The approval of Senate Bill 1135 would also help challenge the re-emergence of eugenic ideologies, as well as prevent abuses in California’s prisons.
Sitting down to watch the science fiction film The Perfect 46, I had the strange sensation of walking through a hall of mirrors. Intriguingly meta-conscious, and perceptibly close to reality, this film highlights the world of direct-to-consumer (DTC) genetics and makes it clear that this technology, now at our real-world doorsteps, could drastically shape our very near future.
The story centers on the aptly named company ThePerfect46, which starts off with a seemingly innocuous mission. Taking advantage of the fact that most Californians have had their genomes sequenced by this undefined point in time, it simply offers to analyze a couple’s genomes alongside each other to determine their ability to have a disease-free child.
But founder and CEO Jesse Darden isn’t content to stop there. In a move that sparks internal controversy and leads to one staff person abandoning the project, he rolls out version 2.0, which allows the company to search through giant databases and match random people together based solely on their ability to create genetically “ideal” children. The film cuts back and forth between a tense situation unfolding for Darden, flashbacks of his life, and a documentary film made about his rise and fall.
While The Perfect 46 is a fictional film, it is being promoted by a real-life website purporting to actually sell ThePerfect46 product (kudos for the smart marketing ploy!).
Darden, played quite well by Whit Hertford, is the star of The Perfect 46. He is a Steve Jobs-esque anti-hero: the disliked techie genius, the man behind the company that aims to improve humanity but ends up causing great harm. Darden comes across as “a tortured genius… a character that can be lauded and loathed in equal measure.” He is romanticized as smart and entrepreneurial, but his considerable personal and inter-personal flaws are never out of view.
Perhaps by now both Darden and ThePerfect46 sound strangely familiar. If so, it’s probably because the similarities to companies and products that actually exist right now are jarring. This is a kind of science fiction that is only just barely fictional.
In fact, writer and director Brett Ryan Bonowicz calls The Perfect 46 “science factual.” He invited a number of researchers to be consultants on the film and strove to show “a respect for science.” The scientific community has applauded his use of “authentic science” and raved about how the film is “a refreshing change of pace” because it doesn’t dissolve into a dystopian nightmare. Here Bonowicz elaborates on why he pursued this approach,
By making the film as factually accurate as possible, the conversation that the film creates should, I think, spark something that a more futuristic, fantastic treatment perhaps cannot. The topics we cover in the film – genetics, eugenics, the moral and ethical implications of a consumer genetics service, and the role of government vs. a DTC model – are discussions that deserve to be out in the public. This is a film of the moment.
In fact, you may find reality to be even more bizarre than this particular fiction. Just last year, the infamous DTC genetics company 23andMereceived a patent for "gamete donor selection based on genetic calculations." The premise of the technology was that it could allow people to choose a sperm or egg provider based on probabilities of having a child with the kinds of characteristics they desired including “height, eye color, gender, personality characteristics and risk of developing certain types of cancer.” In response to backlash from the media about its “designer baby patent” with drop-down menus of characteristics, 23andMe assured everyone that it no longer had any plans to pursue the full range of possibilities described.
Another company, GenePeeks, has remained undaunted. GenePeeks launched just months ago, founded by molecular biologist Lee Silver, who writes broadly about how positive eugenics is both laudable and inevitable, and Anne Morriss, the mother of a sperm donor-conceived son who inherited the rare recessive disease MCADD.
GenePeeks’ “Matchright” is remarkably similar to the product offered by ThePerfect46. For $1995, “GenePeeks digitally combines your DNA and the DNA of potential donor matches to create a preview of thousands of personal genomes that your child could inherit, focusing on a panel of genes involved in childhood health and disease.” Based on this information, you can then preview your personal “catalog” of donors and further weed them out based on your preference for such characteristics as height, eye color, hair color, education level, and ethnicity.
What GenePeeks hasn’t marketed yet is its ability to test for much more than “health and disease.” But the patent it was awarded in January explicitly lists many non-medical traits: aggression, weight, breast size/shape, drinking behavior, drug abuse, eating behavior, ejaculation function, emotional affect, eye color/shape, hair color, height, learning/memory, mating patterns, sex, skin color/texture, and social intelligence, among others. It is thought to be possible to screen for just some of these traits, but all are covered by the patent.
Furthermore, GenePeeks doesn’t intend to limit its availability to sperm banks. It plans to expand soon and become available for “anyone planning a pregnancy in advance.” Of course, there is at least one fundamental flaw in the methodology of all these schemes: two people can have an infinite number of children with a full range of characteristics. Choosing a “preferred” donor can’t possibly absolve all risk.
In fact [spoiler alert], in The Perfect 46, a bug in the company’s algorithm results in the birth of 24 children with a severe genetic disorder. The horrific mistake causes the company to close its doors and forces Darden into solitude, where he continues to develop his work and reflect on what went wrong. What is perhaps most remarkable about the scenario is that no one is ever found to be at fault, even when some of the children die, and at least one suicide results. While Darden is depicted as a broken man, devastated by the fault in a system he designed, he is relatively unmoved by personal stories, including one about a loving couple that divorced after hearing they were “incompatible.” In his mind, “Just because I created something doesn’t mean I’m responsible for how people use it.”
Is this the kind of language that will be used around technologies governing life and death in our market-driven culture? The film probes many such important questions. How quickly does the right to know become the responsibility, or even the requirement, to know? What will people do with this information? And what happens, and who is accountable, when it is wrong?
Furthermore, can changing the kinds of people who are born really be considered “preventative medicine?” When recommendations about who is “fit” to be born are made by a commercial entity, does the absence of state involvement make the actions less eugenic? Is “perfection” what we ought to strive for? If so, what do we make of the founder – who is anxious, anti-social, awkward, not good-looking, and in the end, in “an irony that was lost on no one,” infertile?
The desire to know and control more, even when the meaning of the knowledge and our ability to control it is imperfect, can be powerful. But while it makes marketing sense for drug and genetic testing companies to pathologize more and more conditions, it probably doesn’t make sense for us. As these technologies become increasingly present in our lives, that point risks getting lost.
You can find upcoming screenings of this thought-provoking film here, and check out CGS’s personal genomics news page here. Can you make it through the hall of mirrors, discerning the difference between fiction and reality?
Razib Khan, a PhD student at UC Davis studying the evolutionary genetics of cats, admits that he has “an obsession with genetics.” Two years ago, he sent 23andMe a genetic sample of his 2-month-old daughter so that she could be “easily slotted into the bigger genomic family photo album.”
At the time he predicted that “in the very near future, parents will be able to avail themselves of precise and accurate genomes of their future child in utero.” And just last month he declared, “The future is here, deal with it.”
So it is.
When Khan’s wife became pregnant with a boy, they didn’t waste any time. She had a biopsy of tissue taken from her placenta sent for testing of chromosomal abnormalities. The test showed that the boy was healthy, but Khan wanted to know everything.
After some difficulty, he obtained the original sample from the lab that had tested it and, using his own lab’s high-speed sequencing machine (usually reserved for plants and animals), sequenced the fetus’ entire genome. Using free online software, he was then able to determine 7,000 “genetic variants of interest.” Apparently there was nothing to worry too much about because Khan reported, “It’s mostly pretty boring. So that is good.”
And so his son was born in California earlier this month, becoming the first known healthy baby in the US to have had his entire genome sequenced before birth.
What will it be like to grow up with 7,000 “genetic variations of interest”? At what age will he be told about which? Will he be treated differently because of any of them? Or encouraged to develop specific skills or behaviors? The limited guidelines available for dealing with the genetic testing of children have already been flouted.
Although Khan told MIT Technology Review that sequencing his son “was more cool than practical,” he also “did it to show where technology is headed.” Is this really what most parents will want?
Khan is blunt about the rationale for extensive sequencing in utero – parents will still have a choice about whether to carry out the pregnancy. And he freely acknowledges that this technology throws us headlong into “the second age of eugenics.” But he believes that “the ability to select for quantitative traits” is “a major goal.” And though he regrets that perfection may still be far off, he notes that whole genome sequencing allows one to “select for mutational load” and exclaims,
The marketing pitch for this writes itself: imagine you, but bright of mind, and beautiful of face!
When a technology is so directly imbued with the values that motivated recent human atrocities, what are the avenues for responsible integration? The question of which lives are worthy of existence is one that, in my mind, should never be uncontroversial.
Kevin Mitchell, an Associate Professor in Developmental Neurobiology in Ireland, discussed some of these issues in a blog post last year and concluded,
In the meantime, before we go proposing scientifically impractical and morally questionable extreme measures, we have a proven and powerful tool to make people smarter: education.
Nicholas Wade’s book A Troublesome Inheritance: Genes, Race and Human History has been out for a month, and the fuss, such as it was, seems to be dying down. As of June 6, its Amazon rank has dropped to 1300 (it did briefly hit 21), while Barnes and Noble has it at 34,695, and in The New York Times it’s only at 7 in Science Times, below the long-running hit about Henrietta Lacks.
A roundup of reviews by a supporter essentially confirms that those scientists who bothered to review the book panned it. The Genetic Literacy Project is listed as a positive review, but in fact that’s just a report on Charles Murray's piece in the Wall Street Journal. The minority who were predisposed to agree with his thesis — self-described "race realists" and the like, including some anti-semites at David Duke's site — by and large came away wondering why Wade didn’t go further.
So, is "scientific racism" dead? Unfortunately, it's too soon for that particular funeral. This was just a bad book.
The biologists and anthropologists have taken mighty whacks at A Troublesome Inheritance, though the historians seem to have wisely ignored it. As one raised British, however, I cannot resist quoting Wade’s summary (derived from the work of Gregory Clark) of the changes in England that led to the Industrial Revolution:
Most children of the rich had to sink in the social scale, given that there were too many of them to remain in the upper class. Their social descent had the far-reaching genetic consequence that they carried with them inheritance for the same behaviors that had made their parents rich. The values of the upper middle class — nonviolence, literacy, thrift and patience — were thus infused into lower economic classes and throughout society. Generation after generation, they gradually became the values of the society as a whole.
This is nuts. On many levels, even without the posited evolution of the English gene pool. Did the aristocracy really get rich by being patient, thrifty, well-read pacifists? Uh, no. What Wade is caricaturing here is the petit-bourgeois social armament against exploitation by their employers. It’s bad history, bad economics, bad sociology, bad psychology … to go along with the crackpot science.
But the topic is important, not because this book is a menace to society — though it would be if taken seriously — but because the category error that confuses human genetic variation with socially constructed race remains all too common.
Racial diversity crucial to trials of drugs, treatments
Diversity is certainly important. A trial that included only or mostly men for a condition that also affects women would obviously be lacking, though sadly unsurprising. (A recent paper showed that evolutionary biologists studying genitalia still tend to study penises.) Social communities may indeed be worth studying, for their shared environmental and attitudinal responses. And that does tend to map, to an extent, with self-identified race.
But to think that the problem of genetic diversity in a population sample has been adequately addressed by applying socially constructed race is to make a crucial mistake. And one that may have serious consequences, as social disadvantages are redefined as genetic, with all the baggage that can entail.
Wade repeatedly insists that he actively opposes racism:
The issue is how best to sustain the fight against racism in light of new information from the human genome that bears on race.
That was from his attempt to answer his critics. Anthropologist Agustín Fuentes (whose early conversation with Wade about the book set the prevailing tone of well-warranted critical dismissal) responded, again, that Wade knows not whereof he speaks:
Humans vary biologically, and we are not all the same. But there is only one biological race at present in our species. Understanding that, and the science behind it, is critical.
Human cloning made a media comeback in the last year, with news of three different research groups making embryonic stem cells out of embryos cloned from adult cells, only 17 years after the technique worked to create Dolly the sheep. The scientists have stated clearly that these cloned embryos are meant for research and therapeutic purposes, and that they oppose any efforts to create human clones.
The breakthrough also means that it is now just a matter of time before reproductive cloning is achieved. Probably within the next decade, as one scientist has told me.
As CGS has repeatedly asserted, it really is the time for that federal ban.
What might our unregulated Brave New World look like? BBC America’s television series, Orphan Black by Canadian director John Fawcett, nails it. Now into its second season, this show is seriously good, and starting to get some real recognition.
[SPOILER ALERT] It all begins when Sarah Manning, an English punk who has stolen her boyfriend’s cocaine stash so she can get money to take care of her young daughter, falls asleep on the train and wakes up to find herself at Huxley station. (The cultural references are copious so keep your eyes out.) She moves toward the only other person around, and is shocked to see a woman who looks exactly like herself, if only she were showered and wore a dress suit. Things get interesting fast, as the look-alike jumps in front of the next train, committing suicide before the two can share a word. Quick on her feet, Sarah grabs the purse her double left behind and runs, composing a plan to steal the cash and get her life back on track before anyone can know the difference.
It doesn’t quite work out as she hopes. Sarah soon finds herself deep in a world of secrets and murders that make her former life as an orphan on the run seem easy in comparison. After meeting three more women who look exactly like her, Sarah is finally let into the secret: the women are not long lost twins, but the result of an illegal medical experiment; they are clones. They look the same, but life has dealt them each very different cards. There’s a Ukrainian assassin raised by an ultra-religious group called the Proletheans who have taught her that clones are an abomination of nature, a lesbian grad student with dreads researching the clones’ genetic makeup, and an uptight suburban soccer mom who wears lululemon and funds the “clone club’s” efforts. It turns out that the one who killed herself was a pill-popping investigative cop.
Sarah’s original plan to take the money and run - with daughter (the only known offspring of a clone) and adopted brother (Felix Dawkins) in tow - slowly fades as she starts to unravel the mystery of her existence, and become entwined with the lives of her genetic identicals. The clones slowly realize that their origin story lies with a pro-eugenic scientific movement called Neolutionism, a group that boasts of its ability to self direct the evolution of humanity. The movement’s front man, the charismatic but not-quite-right Dr. Aldous Leekie, is a figure reminiscent of futurist Ray Kurzweil, and he’s got a following to match. In response to a reporter’s question about what his ideal human would look like, Leekie jokingly suggests “people with white hair and one white eye.” Not long after, a whole slew of “Freeky Leekies” pops up, “enhanced” to have those very characteristics.
Not wanting his precious clone creations to be far from reach, Leekie has assigned each clone her own “monitor,” people the women believe are their loved ones, but who actually track their every step. In the season one finale, it is revealed that his control goes further when Cosima (the grad student with dreads) cracks the code she found encrypted in each of their genomes. It turns out to be a patent held by Leekie and his obviously prosperous Dyad Institute.
In the real-world United States, “claims directed to or encompassing a human organism are ineligible” for patents. However, Orphan Black is deliberately ambiguous about where it takes place. Complicating the issue, the show examines the question, what does it mean to be human? The United States Court of Appeals for the Federal Circuit just ruled that cloned animals cannot be patented based on the notion that they are the genetic replica of naturally occurring organisms, but could even a tiny portion of synthetic DNA render one distinct?
Orphan Black certainly doesn’t shy away from drama or controversy, but it manages to pose the big questions without ever coming off as contrived. This is a memorable, unique series, and it seems likely that it will inform public opinion on human cloning for some time. Given the current technological media storm, we all ought to join the conversation. Orphan Black provides the perfect, fun excuse to do so.
Untitled DocumentUpdate 5/12/14: A review of the book by Jonathan Marks has now been posted at In These Times.
Nicholas Wade has just published a new book, titled A Troublesome Inheritance: Genes, Race and Human History. A veteran science journalist, with The New York Times and before that both Science and Nature, Wade might be thought to be in a great position to report on this contentious topic.
Over the past 15 years or so, since the announcement that the human genome had been “mapped,” geneticists have certainly not been reticent about searching for hypothesized racial differences in DNA. Indeed, this has been part of Wade’s beat since at least 2001 (e.g., 1, 2, 3, 4, 5, 6). Race also featured in a chapter of his 2006 book, Before the Dawn.
But he is presenting his new book as a brave exercise in truth-telling:
Scientists are afraid to talk about race. They know that they risk being denounced as racists and having their careers destroyed if they even mention the subject, so they refer to it instead in code words. So I decided that I would write a book that explained what we know about race and what the consequences might be, and I think [Ashley] Montagu made a terrible mistake, though I share his motives.
Montagu was the anthropologist who, in the 1940s and 1950s, did perhaps more than any other social scientist to establish the idea that race is primarily a social construct rather than a biological reality.
Today the genomics community may be somewhat uncomfortable addressing the issue of race and genetics head-on, but anthropologists are not. The first serious public examination of Wade’s current project came on May 5 in a webinar (still available online) organized by the American Anthropological Association, which was set up as a “discussion” featuring Wade and Notre Dame Professor Agustín Fuentes, moderated by AAA Executive Director, Dr. Edward Liebow.
It was not so much a discussion as a debate, and in my view Fuentes defeated Wade thoroughly, though it was all very polite (too polite). Fuentes was well prepared, and able to identify, cite and comment on every study that Wade brought up to support his thesis. More important, he kept hammering away at the definition of “race” — as in, Mr. Wade, can you tell us, what is it? If you are going to claim that certain kinds of genetic variation between populations constitute a racial grouping, how do you define it?
Mostly Wade ignored the question. To the extent that he addressed it, he dismissed it as unimportant. Whether there are three or five races, or more, and where the boundaries are drawn: these are mere details until we admit the possibility of discussing race. (I’m being a little kind to him here myself; he burbled.)
Wade is full of factoids; the impressive thing about Fuentes’ performance was that he was familiar with all of them. That inevitably led to some points of agreement. For instance, at one point, Wade started to speculate about what percentage of genetic divergence would constitute a sub-species, and zoologically, they were in broad theoretical agreement. However, Wade seemed to be edging towards very dangerous waters when it came to the concept of human sub-species. Unfortunately, Fuentes and moderator Liebow were too polite to shove him in.
Which is a shame. The first reviews, and the most enthusiastic early reception, have been on blatantly racist websites. Jared Taylor reviewed it at American Renaissance (which promotes “race realism”) on March 2; John Derbyshire at VDare (an anti-immigration site) on March 14. The marketing department at Penguin, which published Troublesome Inheritance, offered pre-release copies (CGS got one too) with the pitch that the book will produce "a heated debate," presumably on the theory that controversy boosts sales. On the day of publication, May 6, Bryce Laliberte at Social Matter (“not your grandfather’s conservatism”) called it “certain to be this year’s most important book,” and opined emphatically that
The KKK were right.
Laliberte does call the KKK “bad guys,” but he blames the ills of society on “the academic and activist leftists” who promote “the notion that individuals and groups are essentially interchangeable.” He is sure that Wade will be vindicated, and offers a notably full-throated endorsement. Other writers of this ilk had their doubts, expressed for example by Taylor:
However, there is much waffling in this book, which was no doubt meant to ward off beatings but that, at least to undeceived readers, rings of timidity.
Derbyshire refers to “squid ink” that he assumes is intended to deflect critics. Some of the commenters at these sites, and even Stormfront (white pride world wide) are more charitable, suggesting that Wade had guts, hit “a solid double” and implying that perhaps he had to hold back in order to keep his job.
Wade’s arguments aren’t necessarily wrong, just because they look like various erroneous arguments from decades past involving drunken Irishmen, crafty Jews, hot-blooded Spaniards, lazy Africans, and the like.
Wade insists that his intent is absolutely not racist:
I think it’s best to say that racism is wrong as a matter of principle, as a matter of absolute principle, and that way you don’t care what the science says, because you’re not going to change your mind about your principles.
That was at the webinar (around 17 minutes in), where neither Fuentes nor Liebow pushed Wade on the subject of his supporters. Anthropologist Jonathan Marks might have been a stricter interviewer, based on this from his March blog post “Genetics as political ideology”:
By implication, then, the only way to understand claims about human genetics is to understand that they are never value-neutral, and are invariably politically valent. This means that scientists ought to be just as accountable to justify the deducible political implications of their work as they are to justify the data collection and statistics.
Wade clearly takes the opposite view. He’s wrong all round.
Last week's Global Summit on Childhood in Vancouver, a gathering of some 500 advocates for children and childhood, included a session titled "Genetically Modified Babies? An Immediate Threat to Children and What Advocates Can Do Right Now"
Mothers for a Human Future's Enola Aird and I spoke about the proposal pending in the UK for clinical trials of the "three-person embryo"
technique that would constitute inheritable genetic modification. Draft regulations are being finalized now, and will be delivered to Parliament as soon as next month.
Information for delegates to the Summit - and anyone else - who would like to communicate about this proposal to MPs and other authorities in the UK can be found here. Also online are the flyer for our session and our PowerPoint presentation.
Concern about the safety, efficacy, familial and societal implications of such socially and biologically radical procedures has been growing among advocates for children and childhood. Recent commentaries include several by Enola Aird at MomsRising.org:
Posted by George Estreich, Biopolitical Times guest contributor on February 20th, 2014
The “distressed baby” Tim Armstrong blamed for benefit cuts. Photo by Deanna Fei
On Thursday, February 6th, Tim Armstrong, the CEO of AOL, justified a restructuring of the company’s 401(K) matching plan by citing the sick children of employees. Two sick children, to be exact. At an internal town hall meeting, Armstrong claimed, "We had two AOL-ers that had distressed babies . . . that we paid a million dollars each to make sure those babies were OK in general.” Unsurprisingly, the backlash was substantial. Tone-Deaf CEO is a tune we all know, and Armstrong’s improvisation on the theme, like others in the genre, was both memorable and inelegant. The complex discordance of Caring (“OK in general”), Slashing (the benefit cut), and personal wealth (Armstrong’s salary last year: twelve million dollars)—not to mention the blaming-the-infants thing—was answered by a disapproving choir, tweeting and talking and commenting, more or less in unison. Armstrong has since apologized and restored the matching plan to its previous form.
Rising above the other voices was a personal essay published in Slate, and written by Deanna Fei, the mother of one of the babies in question. Fei’s daughter was born months premature, weighing less than two pounds, and her narrative exposes the euphemism “distressed” for what it is:
We were too terrified to name her, to know her, to love her. In my lowest moments—when she suffered a brain hemorrhage, when her right lung collapsed, when she stopped breathing altogether one morning—I found myself wishing that I could simply mourn her loss and go home to take care of my strapping, exuberant, fat-cheeked son.
Since Armstrong’s announcement effectively compromised Fei’s privacy, she essentially had two options. She could remain silent, thereby accepting Armstrong’s characterization of her daughter as a “cost,” or she could out herself, then speak for her child. She chose the latter, replying to his numbers with a story. In doing so, she makes clear that numbers are not enough, that cost and value are not the same.
DNA Dreams, a new documentary by Dutch filmmaker Bregtje van der Haak, could just as well be called DNA Nightmares. The scenarios it unfolds have a kind of eerie pseudo-logic that would be at home in a horror film. But DNA Dreams is a depiction of events happening right now, and that should make us all afraid.
DNA Dreams explores the inner workings of Shenzhen BGI (formerly Beijing Genomics Institute), which calls itself "The World’s Largest Genomics Organization." In addition to its tag line, the company boasts enormous sequencing and storage capabilities, thousands of scientists, and grandiose plans. In one scene, BGI chair Dr. Yang Huanming tells a spellbound crowd in a packed auditorium,
I have a dream. We have a dream. That we are going to sequence every
living thing on Earth, that we are going to sequence everybody in the
But sequencing isn’t all that BGI has up its sleeve.
DNA Dreams follows Zhao Bowen, a "science prodigy" in his teens who dropped out of high school and now leads BGI’s Cognitive Genomics Group, a controversial project working to uncover the genetic basis of intelligence. Over 4,000 bio-informaticians are undertaking whole genome sequencing of 2,000 particularly bright people using the world’s most powerful DNA sequencers. They believe that it is only a matter of time before the alleles associated with intelligence reveal themselves.
In one fascinating scene, a number of key BGI players are eating dinner together, discussing how their research will enable parents to screen their embryos and choose the one that will become the smartest child. One argues,
This isn’t even positive eugenics that we’re talking about, we’re not
encouraging smart people to have kids, we’re encouraging everyone who
has kids to have the best kids they possibly could have.
Amid nods of approval, another notes, "I would totally be willing to do it."
At another point, Michigan State University’s Stephen Hsu, who has been involved with the project, waxes lyrical on its potential,
The best humans have not been produced yet...If you want to produce smart humans, nice humans, honorable humans, caring humans, whatever it is, those are traits that are related to the presence or absence of certain genes and we'll have much finer control over the types of people that are born in the future through this.
We do it with cows, we have super cows and super chickens...We've pushed those animals in directions we want to push them, but we haven't really pushed ourselves, and I think people will push themselves.
There are plenty of reasons to believe that such control of human life won’t work technically – and that if it did, even a little, it would be disastrous socially. Yes, we’ve made cows that get bigger quicker (and genetic manipulation is not the only way this has been done). We haven’t made cows that are smarter, nicer, more honorable, or more caring.
And scientifically, the notion that complex human traits could be determined by "the presence or absence of certain genes" could well end up being nothing more than a DNA pipe dream (another alternative title for this documentary). A paper published in Science earlier this year, with over two hundred authors, reported on a genome-wide association study of over 100,000 people that looked for clues into the genetic basis of cognitive ability.
The grand conclusion? All the measured single-nucleotide polymorphisms (SNPs) account for about 2% of the variance in educational attainment and cognitive function. In other words, "fully 98% of all variation in educational attainment is accounted for by factors other than a person’s simple genetic makeup."
But BGI researchers are undeterred. They believe that the scale at which they can apply whole genome sequencing is unprecedented, and that this will provide them with answers others haven’t found. Bowen says,
It is generally assumed that intelligence is hereditary. Scientists such as Robert Plomin have been studying this for years. But so far they’ve only discovered one percent of that genetic basis. With confidence we can say that we’ll be able to get much further.
Other scientists also seem to have confidence in BGI's cognitive genomics approach. In an interview last spring, evolutionary psychologist Geoffrey Miller (who contributed his own DNA to the project) speculated that it could be only a matter of years before BGI's technology is used for widespread sequencing of human embryos. When asked if he thought the project could develop into something more sinister, he replied, "That same research does open up the door potentially to genetic engineering in the future."
Other BGI already projects could also help open that door. As DNA Dreams shows us, the company has extensive animal cloning and genetic engineering facilities. Its experimental farm produces multiple cloned pigs every day, some of them genetically engineered to glow in the dark, others to be prone to type II diabetes. The farm's 25-year-old director Lin Lin is proud of her work. Beaming at the camera with youthful enthusiasm, she says, "This is life that I created. It was made by my hands."
China, along with dozens of other countries (but not the US), currently bans human cloning and inheritable genetic modification. But BGI now has partnerships all over the world. If the technology improves and a country that hasn’t outlawed it wants to proceed, what would happen? Bowen, for one, believes that "people ought to be free to manipulate their children’s IQ. It’s their own choice."
Bowen is not the first to link the rhetoric of individual choice to a supposed "right" to genetically redesign future children based on personal preferences at a particular moment. But this is a spurious argument. As Nathaniel Comfort points out in a recent Scientific American post called "Is Individuality the Savior of Eugenics?,"
Individual eugenics, in other words, dissolves into a species of collective eugenics. Focusing on individual health does not absolve us of the evolutionary question, Whither humankind?
In an opening scene, DNA Dreams shows a clip from a 1962 film in which a man says about the power of DNA, "All the secrets of life are hidden in this substance. This bottle is
somewhat like Pandora’s box. It’s better to keep it closed, and we’ll
explain to you why."
DNA Dreams doesn't offer an explicit position on what DNA developments should be kept inside the box. It allows the fantastic and terrifying reality of BGI to speak for itself. If you can catch this provocative film at an upcoming festival, you’ll find a lot worth pondering.
“The Gene Factory,” an article out earlier this week in The New Yorker, carries the subtitle, “A Chinese firm’s bid to crack hunger, illness, evolution – and the genetics of human intelligence.”
That firm is BGI, formerly known as Beijing Genomics Institute, a company with 4,000 employees working in a humble eight-story former shoe factory in Shenzhen, China. BGI single-handedly produces over a quarter of the world’s genomic data; it has sequenced over 57,000 people as well as many varieties of plants and animals. And it has no intention of slowing down. As New Yorker writer Michael Specter reports,
The company says the data will help explain the origins and the evolution of humanity, improve our average life span by five years, increase global food production by ten per cent, decode half of all genetic disease, understand the origins of autism, and cut birth defects by fifty per cent.
BGI’s immense, tireless sequencing (and labor) power enables it to undertake work about which other researchers can only dream. At least at the moment, BGI is eager to share its findings. When a deadly strain of E. coli bacteria appeared in Germany in 2011, BGI researchers managed to sequence the bacterial genome in just three days. They live-tweeted their work as it unfolded and made the final data entirely public. This novel approach produced results from researchers around the world that helped prevent a deadly outbreak.
BGI was formerly an affiliate of the Chinese Academy of Sciences, but in the words of its president, was “kicked out” for its “crazy” ideas. That’s when the company really began to flourish. After getting its bearings with minimal research on the Human Genome Project, BGI now has sequencing facilities all over the world, and says it will offer whole genome sequencing for less than a thousand dollars by the end of next year.
But many of the recent headlines about BGI have been about just one of its efforts, which it describes as a relatively small one: the Cognitive Genomics project, which aims to uncover the genetic basis of intelligence by poring through the genomes of thousands of people with extremely high I.Q.s. The project is of course controversial because of how often biological definitions of intelligence have been used to validate problematic and often horrific policies and practices.
Historically, biological explanations for human “fitness” or “superiority” have always been based on what is considered the best science of the time. But it’s likely that complex behavioral traits like intelligence will never be “found” in our genomes; studies so far have produced incredibly limited results.
BGI knows it is treading in socially and ethically treacherous waters with its intelligence project. A BGI press representative told Specter multiple times, without being prompted, that the company would never engage in eugenics. But a number of the researchers involved, including Stephen Hsu, a vice-president for research and graduate studies at Michigan State University, are explicit about what the findings of the project could do to “improve” human reproduction. They seem to welcome the prospect of a real-world Gattaca, in which embryos are extensively screened and carefully selected (and genetically manipulated, as Hsu envisions) prior to implantation.
BGI intends to be a trail-blazer with this project and in the field of genomics in general. Its managers have taken the attitude that their critics will come around when they see their results. Even if that’s not the case, BGI simply may not care. Jian Wang, the company’s president, told Specter,
In the United States and in the West, you have a certain way. You feel you are advanced and you are the best. Blah, blah, blah. You follow all these rules and have all these protocols and laws and regulations. You need somebody to change it. To blow it up. For the last five hundred years, you have been leading the way with innovation. We are no longer interested in following.
For better and worse, 2013 has been a year in which several related
issues familiar to those who follow human biotechnology moved into the
wider sphere of public discussion. Many involve genetic testing — at
every stage of life — and some explicitly raise issues of inheritable
genetic modification. The legacy of eugenics past, the horror of
sterilization abuse in the present, and the advocacy of genetic
selection for intelligence and other traits in the near future all hit
The U.S. Supreme Court issued a series of
important and yet strangely incomplete rulings whose implications are
still being unraveled. The commercialization of synthetic biology and
other newly developed technologies proceeded apace, with well-financed
businesses, partly crowd-sourced ventures and a number of outright
scams. The assisted reproduction industry continued its global spread,
and there were encouraging signs of academic interest in analyzing its
After the jump, much more on:
Testing, Testing …
“Three-Parent” Babies and Inheritable Genetic Modification
Eugenics: Past and Present as Prologue
IQ and Genetics and Education and Immigration
A Glowing Push for Synthetic Biology
The Global Assisted Reproduction Industry
California: Women's Eggs, DNA & Police Databases, the Stem Cell Agency
More than a hundred participants of diverse backgrounds and disciplines heard presentations from three panels, took part in facilitated small-group discussions, and watched a sneak-preview screening of a new documentary.
A number of questions inspired and illuminated the day: Why do the legacies and implications of eugenics matter now? How can we address them in teaching and pedagogy, in policy and activism, and in art? What are the social and ethical consequences of omitting eugenics from historical memory or misrepresenting it? What is the price of the pursuit of "human betterment" for reproductive and disability justice? What is being done – and what can be done – to increase understanding of the legacies of eugenics?
The participants were welcomed by SFSU Provost Sue Rosser and Catherine Kudlick, Director of the Longmore Institute. The symposium's three panels then framed the day:
WHAT? Eugenics and Disability, Past and Present
SO WHAT? The Consequences of Misremembering Eugenics
More than a hundred participants of diverse backgrounds and disciplines heard presentations from three panels, took part in facilitated small-group discussions, and watched a sneak-preview screening of a new documentary.
A number of questions inspired and illuminated the day: Why do the legacies and implications of eugenics matter now? How can we address them in teaching and pedagogy, in policy and activism, and in art? What are the social and ethical consequences of omitting eugenics from historical memory or misrepresenting it? What is the price of the pursuit of "human betterment" for reproductive and disability justice? What is being done – and what can be done – to increase understanding of the legacies of eugenics?
The participants were welcomed by SFSU Provost Sue Rosser and Catherine Kudlick, Director of the Longmore Institute. The symposium's three panels then framed the day:
WHAT? Eugenics and Disability, Past and Present
SO WHAT? The Consequences of Misremembering Eugenics
NOW WHAT? Looking Ahead to Brave New Worlds
At the end of each panel, everyone took part in structured table discussions, which served to introduce the participants and to broaden each person's appreciation of the topics covered. These were based on engaging materials introduced by Milton Reynolds and provided by Facing History and Ourselves.
WHAT? Eugenics and Disability, Past and Present
Eugenics is based on the belief that certain lives are more valuable than others and that those with "higher" value should be encouraged to survive and reproduce while those with "lesser" value should be encouraged (or forced) not to. It takes for granted normative notions of value, humanity, and normality. And it assumes that people with disabilities have no place in this picture, that they are merely a problem to be fixed or erased. Future Past offered a chance to push back against this harmful ideology and worked to re-inscribe disability as a generative force, as another kind of human experience that has much to teach the world.
The long and tangled history of eugenics involves uncommon bedfellows, with many progressives supporting it under various guises at different times. High school students in the United States often learn about the Holocaust as though it were the beginning and end of eugenics, and even many adults are unaware that twentieth-century eugenic laws in the United States resulted in the forced sterilizations of tens of thousands of people. These abuses had a disproportionate impact on communities of color, people living in poverty, and people with disabilities.
Glenn Sinclair bravely recounted his own harrowing experiences of growing up in Alberta, Canada's Provincial Training School, an institution for mentally disabled children and adults. He talked about being sterilized as a child, against his will, and recounted feeling as though he had nothing, that he was no more than an animal. But he has been fighting against this enforced invisibility through sharing his story. He said, "We're all humans on this Earth. We all have our place."
Nicola Fairbrother, the Director of Neighborhood Bridges, expanded on the Canadian history and noted some of the international connections. For example, she shared that the South African apartheid regime actually utilized some of the Canadian eugenics laws. Marcy Darnovsky, Executive Director of the Center for Genetics and Society, made connections between historical abuses of the past and technological advances of the present.
For instance, the rise of genetic testing for embryos and fetuses to "screen out" genetic "abnormalities" sends the message that certain lives are a mistake, to be avoided if possible. These technologies threaten to bring about a new era of eugenics, guided by individual choices, but within a framework of particular social expectations. The availability of these tests has already greatly reduced the number of people in the world with Down syndrome, for example, and the marketing of non-invasive prenatal diagnoses sold with the rhetoric of health, choice, and information is bound to whittle this number down further. If technologies such as whole genome sequencing are offered in the future it will not only provide the allure of a healthy baby, but also of a "better" baby. We will be forced to contend with the complex terrain between reproductive rights and disability rights as these technological advances forever change the nature of pregnancy, knowledge, and power.
The medical language of "cure" and "fixing" is pervasive in our society today, but the disability rights movement is burgeoning and now has an opportunity to fight back against harmful notions of "pure science." Technologies intended to eliminate groups of people are not neutral or merely a matter of personal autonomy, but are informed by particular ideologies of the time and have a profound impact on the larger tapestry of humanity. As medical historian Alexandra Minna Stern put it, "today's science is tomorrow's pseudo-science."
Stern argued that what is needed now is a position that engages both reproductive justice and disability rights, a position that fights for the inclusion of a social model of disability where improved access to resources to help families make informed decisions and maintain a high quality of life are given priority. In her words, "it's a kaleidoscopic-type of map that we need." Future Past helped us all to shade in some of that map.
SO WHAT? The Consequences of Misremembering Eugenics
What are the implications of misremembering this problematic history? Of failing to see the implications of current practices and technological advances? Marsha Saxton, professor of Disability Studies at UC Berkeley who worked on the ELSI project for the Human Genome Project warned of the covert institutionalization of eugenics, as well as offering some of her own personal testimony as a person with spinal bifida.
Troy Duster, Chancellor's Professor at UC Berkeley, asked participants to consider the conditions under which a society makes decisions about who can have a child. He argued that our own era's disruptive socio-economic transformations, and the appeal of political ideologies that categorize people as "makers" or "takers," may be creating "fertile soil" for the growth of new eugenic
Rosemarie Garland-Thomson, professor of Women's Studies at Emory University, argued that eugenics has always been a utopian effort to supposedly control and improve the social order. But, she said, there is an increasingly persuasive counter argument. She mentioned disability rights advocate Harriet McBryde Johnson, whose Too Late to Die Young asserted that "the presence or absence of a disability doesn't predict quality of life."
Rob Wilson, professor of Philosophy at the University of Alberta and principal investigator of Living Archives on Eugenics in Western Canada, argued that reparations can be an important tool for redressing past wrongs, not merely for the ways in which they can ease the suffering of survivors, but because they can force other people to engage with the issues and to see their own connections to difficult histories.
NOW WHAT? Looking Ahead to Brave New Worlds
Moving forward, it is important to understand that the history of eugenics does not begin and end with Nazis and the Holocaust. This limited view can cover up the pervasiveness and even the banality of eugenic ideas, which continue to devalue the lives of women, people with disabilities, ethnic and racial minorities, LGBTQI communities, and people of low socio-economic status through the normalization of practices such as coercive sterilization and prenatal genetic testing. Presenters and participants suggested a number of different ways we can move forward, using this knowledge to advocate for a more inclusive future.
Milton Reynolds of Facing History and Ourselves argued that the process of transitional justice requires multiple intersectional levels of reform: educational, institutional, cultural, social and judicial. He noted that classrooms and teachers will play an important role in creating new frames for thinking about these issues and in allowing the clear vision of hindsight to elucidate contemporary situations.
Patricia Berne, co-founder and director of Sins Invalid, a performance project that "incubates and celebrates artists with disabilities," encouraged engaging with disability through creative means and viewing it within a social justice context. She stated, "if we can't engage our political imagination than we certainly aren't going to have a policy that reflects something liberatory."
Lick-Wilmerding High School teacher Kate Wiley discussed the importance of engaged involvement with young people. She shared an online petition at change.org that her students have created, which asks the Governor of California to include California's history of eugenics in state textbooks. (Check it out – they still need more signatures!)
Gregor Wolbring, Associate Professor of Disability Studies at the University of Calgary, skyped into the conference and brought the issue of human enhancement and germline engineering into the discussion. He argued that these technologies are a form of positive eugenics, based on the same ideologies of ableism that are inherent in negative forms of eugenics such as sterilizations.
* * *
A pre-release screening of the film FIXED: The Science/Fiction of Human Enhancement, and a discussion with producer and director Regan Brashear at the end of the day, brought this point home further. The film provided provocative material with which to question how technology fundamentally alters notions of normality and ability.
Many things may come out of the Future Past symposium: connections between people of diverse ages, backgrounds, and disciplines; improved understanding and knowledge of resources for people working on these issues in various formats; and increased momentum for engaging more deeply with these issues. Through a better understanding of histories of intolerance, ignorance and eugenics, we may become more adept at contextualizing the present, and advocating for a more humane future.
As Emily Beitiks, Assistant Director of the Paul K. Longmore Institute on Disability, said at the end of the day, hopefully in the future we will not need to hold a conference to make the argument that certain people have the right to exist.
Dominic Cummings, a senior adviser to the UK Secretary of State for Education, recently provoked a flurry of complaints by allegedly claiming that "a child's performance has more to do with genetic makeup than the standard of his or her education." In response, he insisted that he had "warned of the dangers of public debates being confused by misunderstanding of such technical terms." Whatever you may think of that defense, it's worth looking a little more closely, because Cummings' technocratic, effectively eugenic, definitely gene-focused approach is dangerously close to affecting public policy.
Cummings has been called "arguably the most brilliant" special adviser in the UK government, but he also seems to be viewed as something of a loose cannon who has been blamed for leaks and criticized for the use of "colourful" language. He was awarded a First in History at Oxford, and has a background in activism against the UK adopting the Euro, and then controversial stints in the Conservative Party apparatus.
As an education adviser, he wrote what is called, oddly, a "private thesis" for the UK's Secretary of Education. What Cummings himself calls an "essay" runs 237 pages and is modestly titled "Some thoughts on education and political priorities" (10.3 MB pdf). It is a … remarkable document. From the third paragraph:
Less than one percent [of English school-leavers] are well educated in the basics of how the 'unreasonable effectiveness of mathematics' provides the language of nature and a foundation for our scientific civilisation. Only a small subset of that <1% then study trans-disciplinary issues concerning complex systems. This number has approximately zero overlap with powerful decision-makers.
That's the flavor of the thing; basically, baffle them with bullshit. It's full of name-dropping: in the first four pages, we find mentions of Murray Gell-Mann, Thucydides, Rudyard Kipling, Dean Acheson, Carl Sagan, E.O. Wilson, Mark Zuckerberg, Linus Torvald and many more. Later on, Malcolm Gladwell is solemnly criticized because he "downplayed the importance of genes" as demonstrated in a New York Times review by Stephen Pinker. (This amuses me since I suspect that the three of them thoroughly deserve each other's company.)
What provoked the fuss about this, beyond the frisson that comes from the document having been leaked by the Guardian, was Cummings' association of genes with IQ. He does indeed qualify his discussion of heritability, noting on page 196 that heritability "is a population statistic — it does not mean that for every individual x% of one's IQ score is accounted for by genes."
But that's not really the problem with his approach. Let's start with Cumming's full-throated endorsement of the BGI project to identify the genes for intelligence. He approvingly quotes the physicist Steve Hsu (linking to a Google Tech Talk):
Hsu says: 'I'm doing my best to increase the number of future humans who will be "fully awake". My current estimate is that one or two hundred common mutations (affecting only small subset of the thousands of loci that influence intelligence) are what separate an ordinary person from a vN [von Neumann].'
Most of Cummings' genetics comes, as he admits — nay, boasts — from Hsu and Robert Plomin (who is "much more cautious" than Hsu about "engineering higher intelligence"). This is summarized in a nine-page Endnote on "intelligence, IQ, genetics, and extreme abilities." The concluding sub-section on "Genetics, school achievement, 'added value' measures" includes the hackneyed trope, beloved of Victorian schoolmasters, that:
Instead of thinking about education as instruo (build in) we should think of it as educatio (draw out).
How true that is. Especially for … oh, you guessed it. From page 76:
We know (thanks to studies such as SMPY and Terman) that although cognitive tests are noisy, we can quite accurately identify the top ~2% in IQ on whom we rely for scientific breakthroughs and even crude tests at 13 predict differences within the top 1% [italics in original] in future scientific achievements … We should give this ~2% a specialist education as per Eton or Kolmogorov [see here and here], including deep problem-solving skills in maths and physics.
And there you have the blatantly eugenic association of genes with intelligence, intelligence with worth, and worth with the right to rule.
Steve Jones, Emeritus Professor of Genetics, critiqued Cummings based, it seems, on the first newspaper reports. What he wrote was fine, but Cummings did include enough caveats in his full document to wriggle out of the criticism and find points of agreement with Jones. Steven Rose, Emeritus Professor of Biology, offered a more detailed analysis in New Scientist, concluding:
Whatever intelligence is, these failures show that to hunt for it in the genes is an endeavour driven more by ideological commitment than either biological or social scientific judgement. To suggest that identifying such genes will enable schools to develop personalised educational programmes to match them, as Cummings does, is sheer fantasy, perhaps masking a desire to return to the old days of the 11 plus. Heritability neither defines nor limits educability.
At root, Cummings' simplistic genetics is not the issue. His technocratic eugenics emphatically is. And that deserves to be brought into the open and shredded.
On September 24, the direct-to-consumer genetic testing company 23andMe was awarded a patent for "gamete donor selection based on genetic calculations." The idea is that people using sperm or egg providers would choose from the gametes on offer based on the probability of getting the kind of child they want. The examples given in the application of the traits of hypothetical children that might be of interest include:
Height, eye color, gender, personality characteristics and risk of developing certain types of cancer
There is a helpful flowchart (part shown here) to explain how the technology would be used to evaluate the possible matches between the client (recipient) and the available donors, and so to identify preferred donors, given that it would be dealing with statistical information rather than certainties.
That, of course, points up the biggest flaw in the process. Even a direct-to-consumer gene-testing company is compelled to acknowledge that there can be no guarantees. But they don't make clear that for the vast majority of "traits of interest," the associations between particular alleles and particular phenotypes are actually rather weak. (A few conditions, including single-gene ailments and some inherited forms of cancer, can be identified and avoided through pre-implantation genetic diagnosis or carrier screening, but they are rare.) The associations were weak four years ago, when the patent was filed, and they still are.
But the company is, after all, in the genetic prediction business, and the patent in question referred to a "hypothetical child." So it's hardly surprising that when news of this patent broke, most journalists made the same call. Nature News and MIT Technology Review had "designer babies" in the headline. Wired called it a "designer baby system." The Los Angeles Times labeled it a "designer baby patent." New Scientist referred to "planning a baby."
Perhaps the most thoughtful immediate response was published in Genetics in Medicine just before the media got hold of the story. Four European bioethicists (Sigrid Sterckx, Julian Cockbain, Heidi C. Howard and Pascal Borry) considered the patent under the title:
"I prefer a child with …": designer babies, another controversial patent in the arena of direct-to-consumer genomics
It's a short paper in which the authors largely restrict themselves to raising questions and noting controversy. They point out, for instance, that the U.S. Patent Office does not seem to have questioned whether such techniques "were appropriate subject matter for a patent" although it did invoke "morality" when considering the human/animal chimera patent application made by Stuart Newman and Jeremy Rifkin. (That was eventually rejected as too human to be patentable.) And the authors ask whether 23andMe's customers would be disconcerted by this use of their collected data; there was an outcry last year when the company was granted a patent for a test for Parkinson's disease.
As soon as the news stories began to appear and 23andMe realized that people were drawing the obvious conclusion, it began backtracking hard. It now claims that the patent relates to "one of the tools we offer individuals as part of their genetic exploration [which] offers an engaging way for you and your partner to see what kind of traits your child might inherit from you." Nothing there about choosing donors. The company's blog explains:
At the time 23andMe filed the patent, there was consideration that the technology could have potential applications for fertility clinics so language specific to the fertility treatment process was included in the patent.
To say "included" is disingenuous; the process description in the patent is entirely about the selection of gametes from strangers. The post continues:
But much has evolved in that time, including 23andMe's strategic focus. The company never pursued the concepts discussed in the patent beyond our Family Traits Inheritance Calculator, nor do we have any plans to do so.
So that's all right then. But wait, there is a kicker in that same statement:
23andMe believes that patents should not be used to prevent individuals from accessing their genetic data or its interpretation.
So would the company license that patent? It doesn't say. The Center for Genetics and Society has called on 23andMe to use its patent to prevent others from exploiting this technology. That's not unheard-of: the Newman/Rifkin application was explicitly intended to prevent development of chimeras. Thus far, 23andMe has not explicitly ruled out its future use.
Many of those who commented on the 23andMe patent, including CGS, law professor Lori Andrews, and geneticist Daniel MacArthur, expressed doubt about the practical feasibility of most trait selection. But even if scientifically dubious, the project of "breeding better babies" is, obviously, morally and socially fraught.
A few philosophers, such as Julian Savulescu, actively campaign for it as a moral imperative. In opposition stand CGS and many others. Harvard's Michael Sandel put it well when he said that trait selection "edges close to eugenics." This debate has up till now been theoretical. It's getting all too real.
Victims of forced and coerced sterilizations carried out under North Carolina’s decades-spanning Eugenics Board program finally received some good news earlier this summer: The state legislature has agreed to spend $10 million to compensate them for the abuse they suffered. Offering compensation to those who are still alive – 177 men and women have come forward and been verified so far – is an important recognition of the moral and practical failure of this eugenic practice.
North Carolina sterilized some 7,600 people between 1929 and 1974 for a range of reasons, including findings by authorities that they were lazy, promiscuous, or poor. State records have revealed the extent of the discriminatory nature of the program: “North Carolina's sterilization program zeroed in on welfare recipients. Over the last 15 years of its operation, 99 percent of the victims were women; more than 60 percent were black.”
The decision to compensate sterilization victims has been a long time coming. The state established the North Carolina Justice for Sterilization Victims Foundation in 2010, but the agency was temporarily forced to close its doors last summer when the Senate brought the compensation effort to a halt. Its ultimate success is in large part a testament to the passion of advocates such as Elaine Riddick, who was sterilized at the age of 14 after giving birth to a child that resulted from rape. She had no idea of what had been done to her until years later when she tried unsuccessfully to start a family with her husband.
North Carolina will be the first US state to offer compensation to victims of sterilization, but could inspire some of the other thirty states that had similar eugenics laws to follow suit. Coming to terms with this history is hugely important. It’s easy in hindsight to recognize what it was: in the words of medical reporter Elizabeth Cohen, a “horrific chapter in American history.” At the time, however, as she points out, “the programs were supported by some of the nation's most respected doctors, lawyers, and social workers.”
Most Americans are unaware of the country’s eugenic legacy. That is also true in California, where some 20,000 people, including a disproportionate number of Latinos, were sterilized under state auspices. As a group of California high school students pointed out in an online petition to incorporate this history into the curricula,
Learning about eugenics in California is not simply about being more informed, or redressing past wrongs, but about considering difficult questions about justice, equality, and human rights. We have seen how these questions are now more important than ever, as we move into an uncertain age of genetic science.
Unfortunately, involuntary sterilizations, as well as the ideology that informs them, are not behind us. They still occur today, often arranged by people who seem to genuinely believe they are helping society.
Guernica magazine recently reported that Kenyan doctors have been sterilizing HIV positive women, sometimes without their knowledge. Israel has admitted to targeting Ethiopian Jews for compulsory long-term contraception. Sweden only just changed a 30-year-old law that required transgender people to undergo sterilization before they could legally be recognized as another gender.
But involuntary sterilizations also occur much closer to home.
Just last month, an exposé by Corey G. Johnson of the Center for Investigative Reporting reported that 148 women in two California prisons were illegally sterilized between 2006 and 2010. Justice Now, a prisoner rights group that first uncovered evidence of this abuse, started a petition with Californians United for a Responsible Budget to demand that it end.
Thankfully, these efforts are having an impact. California legislators have just unanimously approved an audit of the doctors who carried out sterilizations of nearly 150 women without required authorizations.
Questionable sterilization efforts also continue today outside of prisons. A few years ago, a Louisiana state representative proposed paying poor people to get sterilized. A private organization, Project Prevention, pays crack addicts $300 to get sterilized. Wesley Strong recently wrote about its program:
Barbara Harris and Project Prevention are products of a post-1980s era where racism, sexism, and classism are far more nuanced, where eugenics programs can hide behind liberal notions of charity.
Looking from sterilizations of the past to those of today, it’s not hard to see all of the same racist, sexist and classist influences at play. However, as Nathaniel Comfort recently discussed in Scientific American, there are those who want to deny that structural discrimination still plays a role in modern eugenics. This “growing constituency of Drs. Jekyll within the biomedical community” argues that eugenic practices guided by individual choice are a clean break from the eugenics of the past. But as Comfort points out, “Individual eugenics, in other words, dissolves into a species of collective eugenics. Focusing on individual health does not absolve us of the evolutionary question, Whither humankind?”
North Carolina’s compensation decision is a huge victory, and provides a valuable lens through which to see how easily eugenic practices can be viewed as valuable, progressive, social measures. Instead of waiting for the next generation to refer to our own “horrific chapter in American history,” let’s hope it signals an end to tolerance of all involuntary sterilization.
Last week, researchers at the University of Oxford announced that the first baby had been born after undergoing a technique which can sequence the entire genome of an embryo. The story was accompanied by a cute picture of baby Connor Levy, fast asleep on a fluffy white blanket wearing a shirt that reads: Made with love (where the ‘o’ of love is an image of an atom.)
No one could deny the claim. His parents, a couple from Philadelphia, had tried natural pregnancy for five years, then three rounds of intra-uterine insemination, and finally IVF in the hopes of having a child. They decided to take part in Oxford’s international study of next-generation sequencing (NGS) and sent cells from thirteen of their IVF embryos. A fertility specialist looked at the chromosomes of each and found that three had the right number. One was implanted into the mother and nine months later Connor was born.
In this instance, researchers used only the number of chromosomes as selection criteria. Chromosomal abnormalities account for half of all miscarriages and lead to conditions such as Down syndrome and Turner syndrome in the babies who survive to birth. Of course, not everyone sees this type of selection as wholly benign: Some question whether decisions to terminate pregnancies when Down syndrome is identified are typically made with full information; some consider the trend a problematic form of modern eugenics, rather than a medical necessity.
But this is obviously a happy occasion for the Levy family, and for many others who are struggling with infertility. Many fertility experts believe that new forms of genetic testing can greatly increase success rates and efficiency of IVF overall, particularly for older parents. Michael Glassner, the couple’s fertility specialist, firmly believes in the potential of NGS and stated, “In five years, this will be state of the art and everyone who comes for IVF will have it."
Genetic testing of embryos for the purpose of screening out disease does already occur. According to the Human Fertilisation and Embryology Authority, there are 263 medical conditions (and another 32 under consideration) that are considered serious enough to warrant the use of preimplantation genetic diagnosis (PGD), the genetic screening of embryos prior to implantation.
But NGS carries potentially broader implications.
This “revolutionary” process is capable of sequencing an embryo’s entire genome, providing an unprecedented degree of information about it prior to implantation. This would give parents much more (but often imperfectly understood) information, including about the child’s chance of developing certain diseases, as well as non-medical characteristics such as eye and hair color.
Is this what parents want? William Saletan at Slate is concerned that we’re only reporting the successes of embryo testing and warns that
We’re discarding embryos over the possibility of breast cancer, which rarely strikes before age 30, and early-onset Alzheimer’s, which doesn’t begin till 40 or 50. We’re rejecting them to avoid the risk of conditions such as rhesus blood disease, where onset is dubious (specific antibodies have to cross the placenta to the fetus) and the cure rate is 70 to 95 percent. We’re even chucking embryos just because their genes make them useless as tissue donors.
To move from testing embryos for specific genetic mutations based on family history to testing entire genomes no matter what would be a huge shift. Saletan seems largely concerned with the fate of the embryos themselves, but there are other reasons NGS would put parents-to-be in an uncomfortable position. How would people longing for a child weigh one abnormality or imperfection against another, or contemplate abstractions such as a 50-60% disease risk against a potential human life?
Nevertheless, there are already those with far broader hopes for the technology.
Zhao Bowen, the 21-year-old who oversees BGI Shenzhen’s multimillion-dollar research project searching for the genetic underpinnings of intelligence, explicitly hopes his research will be used to breed smarter babies. According to Wired, those on his team “expect that within a decade their research will be used to screen embryos during in vitro fertilization, boosting the IQ of unborn children by up to 20 points.”
Momentarily putting aside the fact that there is currently no evidence to suggest that genetic selection for intelligence is possible, if such research does pan out, it will largely be limited to the privileged elite. As Heather Long argues in the Guardian, “If we think the gap between the haves and have-nots is large now, just wait until this technology is used to pre-select characteristics for success.”
Of course, the process of selecting among existing embryos is somewhat limited in its design capabilities. It is important to note the difference between choosing traits based on selection, and actually modifying the germline of embryos in order to create a desired result.
An editorial in New Scientist noted that the announcement of Connor’s birth “brings the prospect of designer babies one small step closer,” but that “until it becomes possible to genetically engineer embryos rather than just select them, true designer babies remain in the realm of science fiction.”
The authors agree that we shouldn’t simply sit back and wait for that to happen. But they fail to mention how close this possibility truly is. The UK Government is preparing right now to draft regulations that would undermine the country’s ban (as well as international law and consensus) to allow embryo manipulations that would effect all subsequent generations. The justification is that this step would be a limited one aimed at allowing a small subset of the women with very serious mitochondrial diseases to have a healthy and mostly genetically related child. But it would provide the biggest push to date down this particular slippery slope.
Corey G. Johnson of the Center for Investigative Reporting (CIR) published on July 7th a detailed exposé of unauthorized sterilizations of unwilling women in California jails from 2006 to 2010:
At least 148 women received tubal ligations in violation of prison rules during those five years — and there are perhaps 100 more dating back to the late 1990s, according to state documents and interviews.
Johnson's excellent and careful reporting has brought to national attention a scandal that some activists have already at least partially documented. Justice Now presented testimony [pdf] about it to a California Senate subcommittee on March 13, 2012, and discussed their findings at a conference in August (co-sponsored by CGS) called "Eugenics in California: A Legacy of the Past?" (video is available).
It is important to note that, as the CIR article says (links are provided to the relevant statutes), these sterilizations were illegal:
Federal and state laws ban inmate sterilizations if federal funds are used, reflecting concerns that prisoners might feel pressured to comply. California used state funds instead, but since 1994, the procedure has required approval from top medical officials in Sacramento on a case-by-case basis.
Yet no tubal ligation requests have come before the health care committee responsible for approving such restricted surgeries …
How could this happen?
Governor Gray Davis apologized in 2003 for California's twentieth-century sterilizations, 20,000 procedures carried out under an explicitly eugenic law. He did so quietly, via press release, and with no attempt to discover or compensate the victims. (Recognized experts on American eugenics were disappointed at the time: Paul Lombardo called it "premature" and Alexandra Minna Stern said it was "preemptive.") Now his statement seems like a sham. The fault is no longer the law, it's the failure to follow the law.
North Carolina is still struggling to pass a budget that includes compensation for its victims of eugenic sterilization. California has barely started the process of coming to terms with its troubled history.
The California state prison system is overcrowded — Governor Jerry Brown is appealing a federal court order to release inmates — and conditions are so bad that 30,000 are on hunger strike. If this report about sterilization helps to usher in a period of genuine reform, that would be wonderful.
We would still need to educate all too many people, inside and outside the jail system, about the moral and practical harm of modern eugenics. Based on some of the remarks by state officials that Johnson reported, and on some of the comments on coverage of his investigation, people slide right back into eugenic ways of thinking.
Update, July 11: Justice Now and Californians United for a Responsible Budget (CURB) have started a petition "demanding that the state end; make amends for; and prevent sterilization abuse, period." (See Comments below for more.) Meanwhile the California Legislative Women's Caucus is demanding answers. This would be a good time to put pressure on the legislature and the Governor.
Last month, the UK government announced it would move toward human trials of a risky, controversial and widely misrepresented technique known as “mitochondria replacement” or “three-parent babies.” The technique is currently prohibited by law in the UK (and in dozens of other countries), so final approval would require a legislative change. With another round of public consultation pending prior to legalization in the UK, here are the top misconceptions proliferating about the efficacy, safety, public support, and societal implications of mitochondria replacement.
Misconception 1: Mitochondria replacement “will save lives.”
It’s troubling when media accounts sloppily represent these techniques as “saving lives.” It’s worse when scientific and government officials mislead in this way. But it’s been far too common. Chief Medical Officer for England Dame Sally Davies, for example, claims that mitochondria replacement is a “life-saving treatment” and “will save around 10 lives a year.”
Fact: Mitochondria replacement will not save any lives; it is not a treatment for any of the people who are currently suffering from mitochondrial disease. Its aim is rather to create a prospective child who would be genetically related to a mother affected by the condition, and who would (if the new technique worked) be healthy.
Misconception 2: Mitochondria replacement techniques will eliminate mitochondrial disease in future children, which no other technique can achieve.
This is the fundamental premise and motivation for advocating these techniques, and it is repeated regularly. See examples here in the Telegraph and here in the Guardian.
Fact: Both aspects of this premise are misleading. First, even if the techniques were to work perfectly, they wouldn’t be able to guarantee a child free of mitochondrial diseasebecausein the majority of cases, the conditions are caused by anomalies in nuclear DNA. They can also occur due to spontaneous mutations or with age. Furthermore, the HFEA acknowledges that mitcohondria replacement may not even be effective at removing all of the mutated mitochondria from a future child.Annex VIII of its final report states:
The panel recommends that any female born following MST or PNT should be advised, when old enough, that she may herself be at risk of having a child with a significant level of mutant mtDNA, putting this child or (if a female) subsequent generations at risk of mitochondrial disease. Thus, we recommend that any female born following MST or PST is advised that, should she wish to have children of her own, that her oocytes or early embryos are analyzed by PGD in order to select for embryos free of abnormal mtDNA. (page 5)
That leads to the second point – there is already a safe available technique (preimplantation genetic diagnosis or PGD) that allows carriers of mtDNA mutations the ability to have healthy children of their own. If the HFEA recommends that girls born after mitochondria replacement use the technology, then why wouldn’t a woman simply use it in the first place? Even women with high levels of mutations in their own mitochondria can produce eggs with very low levels; PGD can find those embryos and (with a high rate of success) implant them back into a woman to produce a healthy child.
Misconception 3: This technique would be in high demand because one in 200 babies is born with mitochondrial disease.
Many news articles (particularly early on) bought into this, likely because the HFEA’s website states that, “Around one in 200 children are born each year with a form of mitochondrial disease.”
Fact: This is an extremely misleading way to discuss the incidence of mitochondrial disease. The HFEA seems to be relying on findings that around one in 200 people in the general population have mutations in their mitochondrial DNA, but most of these people will not experience any negative impact. Estimates of the number of people who actually have mitochondrial disease run around one in 5,000-10,000. Their conditions run the gamut from very minimal to quite debilitating. But only about 15% of these cases are likely caused by mitochondrial DNA: the majority of mitochondrial disease is caused by interactions with nuclear DNA. Of this greatly reduced subset, it is only women with a very high level of mutations who would be potential candidates for using mitochondria replacement rather than PGD to have a genetically related healthy child. Officials at the UK’s Human Fertilization and Embryology Authority and at its Department of Health – both agencies that are advocating moving forward with mitochondria replacement – have estimated that perhaps 10 women a year would consider the procedure.
Misconception 4: The techniques have been proven to work in animals.
For example, the Guardian states here that “The procedure has been shown to work in animals.”
Fact: There were a number of studies done mostly in the 1990s using one kind of mitochondria replacement technique (pronuclear transfer or PNT) in mice (see footnotes 3 – 6). However, the HFEA required that researchers at Newcastle University test PNT on a non-human primate model, which they never did. A research team inOregon did try PNT on macaque monkeys, but found it to be unsuccessful, with embryos failing early, and thus abandoned PNT. They have shown success using another kind of mitochondria replacement (maternal spindle transfer or MST), although the monkeys are still young and no further generations have been studied. This knowledge has not deterred Newcastle,or the HFEA, from pushing for human trials of PNT. The HFEA’s response to the failed macaque experiments was to drop the requirement(see page 21) for non human primate testing.
Misconception 5: There is broad public support for mitochondria replacement techniques.
The HFEA put out a press statement on March 20 which cited “broad support for permitting mitochondria replacement” as the general conclusion of its public consultation on the techniques. This was consequently repeated by nearly every media report on the consultation.
Fact: By far the largest number of people (over 1,800) who took part in any of the different “strands” of the HFEA’s consultation were involved with the online open questionnaire. The majority of these participants wrote to say that theydisagree with the introduction of either mitochondria replacement technique (PNT or MST.) In its past consultations, the HFEA has presented this strand, as the only portion which is open to everyone, as the most important. In this case, the HFEA is downplaying it.
For more on the numerous ways in which the HFEA has misrepresented its own data by claiming “broad support” from the public, see this blog post.
Misconception 6: The genetic contribution of the donor of mitochondrial DNA is inconsequential.
This is another claim that has been made repeatedly. For example, Doug Turnbull, Professor of Neurology at Newcastle University said, "Mitochondrial genes only help produce mitochondria. They have absolutely no role in any other characteristics.”
Fact: This statement is quite misleading. It is true that mitochondrial DNA constitute only 37 genes, but that does not mean they do not have significant phenotypic effects. Mitochondrial DNA has an impact on cognition, aging and cancer, adult-onset diabetes and deafness, and interacts consistently with nuclear DNA. Among other things, mitochondrial DNA provides metabolic energy during embryonic development, which clearly has a large impact on phenotype.
Responding to Turnbull’s claim, New York Medical College Professor of Cell Biology and Anatomy Stuart Newman said:
If mutations in different mitochondrial genes affect different organs (which they do), how can it possibly be maintained that mitochondrial genes "only help produce mitochondria"? Impairment of mitochondria impairs development – that’s how the diseases are produced. Genetic variation (even within a normal range) leads to phenotypic variation. The inescapable conclusion is that normal variations in mitochondrial genes must have differential effects on developmental outcomes.
Misconception 7: Mitochondria replacement is just another kind of IVF
Numerous media accounts have referred to “3-parent IVF” or called mitochondria replacement an “IVF treatment,” and some have compared the initial uncertainty around the safety of IVF to the current uncertainty about the safety of these techniques.
Fact: There is a critical difference, which Stuart Newman sums up well in The Huffington Post:
Unlike in vitro fertilization (IVF) which generates embryos from the biological components that evolved to serve this function, the two methods under consideration by the HFEA de- and reconstruct the fertilized egg in radical ways, unprecedented in the history of life.
Misconception 8: The “slippery slope” argument is overstated; no one wants to modify nuclear DNA.
If human trials of mitochondria replacement are approved, it would be the first time that any government has authorized genetic changes that would affect future children and their descendants. Such procedures – known as human germline engineering – have been prohibited by dozens of countries because of concerns that they would open the door to a new form of high-tech eugenics, with profound societal consequences.
Some advocates of mitochondria replacement simply dismiss these concerns, rejecting them as a “slippery slope” argument.
Fact: If mitochondria replacement is allowed, there will almost certainly be increased pressure to permit modifying nuclear DNA in the name of preventing diseases. For example, Robin Lovell-Badge, head of developmental genetics at the MRC National Institute for Medical Research, told Wired that there’s no point in worrying about germline modification, but then went on to state,
I do not argue that germline genetic modification of nuclear genes should never be considered, for example, parents might accept modifications that would protect their child against diseases such as AIDS. However, we do not yet have the technology or knowledge to guarantee that any such genetic alteration would be safe.
Well, we don’t have the technology or knowledge to guarantee that PNT would be safe either. (In fact, Newcastle University did not submit any published material to the HFEA’s safety review.)
The reason there has been an international consensus against human germline modification is that it is incredibly hard to draw a line anywhere else. Lovell-Badge proves that point above. If this line is crossed for the prevention of certain kinds of diseases, there will be increased pressure to research and fund other kinds of genetic prevention – in spite of safer alternatives in very nearly every case, as there are with mitochondrial disease.
And if interest and money begin flowing into development of germline genetic modification, it is naïve to imagine that there would not be fertility clinics willing to offer couples the ability to choose “designer” traits of their liking, and some who would argue this is simply a matter of reproductive choice.
But when the facts are presented without misrepresentation, the case for mitochondria replacement – as for other kinds of inheritable genetic modification – is flimsy at best. For more information on mitochondria replacement and its implications, see the Center for Genetics and Society’s press statement or this detailed resource page.
Jason Richwine was forced to resign from the Heritage Foundation by a media storm about his offensive comments on race and IQ. That's remarkable, and perhaps significant, but there are likely more and bigger headlines to come.
The background in brief: Richwine co-authored a Heritage position paper titled "The Fiscal Cost of Unlawful Immigrants and Amnesty to the U.S. Taxpayer," clearly published to oppose immigration reform.The paper was unwelcome to all but right-wing extremists, for various reasons, and it soon came out that Richwine's 2009 doctoral thesis included such statements as (on p. 66):
No one knows whether Hispanics will ever reach IQ parity with whites, but the prediction that new Hispanic immigrants will have low-IQ children and grandchildren is difficult to argue against.
His dissertation proceeded to explore "the proposition that immigration policy should select for IQ" (p. 123). That wasn't explicitly in the Heritage study, but it certainly provided a handy cudgel. The report was released on Monday May 6, his thesis was reported on Wednesday, and he "resigned" on Friday. One of Richwine's mentors was Charles Murray, of The Bell Curve infamy, who promptly tweeted:
Thank God I was working for Chris DeMuth and AEI, not Jim DeMint and Heritage, when The Bell Curve was published. Integrity. Loyalty. Balls.
From Murray's perspective, he has a point. For the rest of us, it's actually heartening that such opinions have become toxic. And the dust-up has provoked some insightful commentary (e.g., Ta-Nehisi Coates at The Atlantic, Ari Rabin-Havt at Media Matters, Diego von Vacano at The Monkey Cage).
However, it's also important to note that "respectable" politicians have always been willing to jettison those that go too far. William Shockley, for instance, was effectively shunned in the 1970s, but Murray and Richard Herrnstein had no trouble putting their work into the public sphere in the 1990s. And indeed the backlash to the backlash may already be starting, as Andrew Sullivan (who, as editor of The New Republic, published excerpts from The Bell Curve) detects "red flags about intellectual freedom."
Race and IQ may now be a dangerous combination, but the combination of genetics and IQ is definitely on the rise. China's BGI has for a while been running a research project on "genius genes," headed by Zhao Bowen, who claimed in February that it would produce results in three months. That would be now. Well, we don't have the data or the analysis, but we are seeing a burst of publicity.
An article in the London Times on May 14 (unrelated to the news about Richwine) includes more caveats than previously:
"The reality is that the genomics of IQ will be much more complex than saying: 'Look, here are the genes for genius.' We will be talking about hundreds, possibly thousands of genes and mutations, each with a tiny effect on IQ. Will someone somewhere want to try to engineer intelligence in embryos? Will someone claim they can make your unborn child more intelligent? Of course they will. But it's not technically possible now and won't be for decades," Zhao says.
Sure. But the caption to one of the accompanying photos reads:
If Zhao Bowen discovers the intelligence gene, he may be able to determine a baby's IQ from a blood sample
A simultaneous article in Nature News says that the project "is slated to begin data analysis in the next few months." It reports that BGI is "halfway through its sequencing" but the rest of the work might take as long as a year. It also includes a noteworthy comment from Harvard geneticist Daniel MacArthur:
If they think they're likely to get much useful data out of this study, they're almost certainly wrong.
That's likely true—but no real reason for comfort. The researchers will find something. And someone will abuse the findings. History tells us that's a given. The fallacy may not be that Hispanics (who, ahem, are a cultural community not a race) are dumb, or Jews (essentially a religious group) are smart, or Asians (a broad geographical set) are good at math, or any such nonsense. But suggesting that this embryo has brilliance while this one does not … that could become a very significant problem.
An undated Daily Mail article that is actually over a decade old continues to spread misinformation about the current state of human genetic modification. In fact, the operations it describes were shut down by the FDA in 2001, and the specific techniques it refers to have been abandoned.
The article begins with the provocative statement, “The world's first genetically modified humans have been created, it was revealed last night.” There is no date anywhere within it, which has led to a great deal of confusion. Many understandably believe it happened last night given that today’s date shows up at the top of the page.
These reports, and the Daily Mail article, discuss up to 30 births that followed a process called ooplasmic transfer. Fifteen of these babies were reportedly born at the Institute for Reproductive Medicine and Science of St Barnabas in New Jersey under the guidance of Professor Jacques Cohen in an attempt to help infertile women have a child. Altering the human germline – something he was aware he was doing and in fact made a point of publicizing – was not of great concern to him.
However, many others were quite concerned. BBC News Online reported,
Altering the germline is something that the vast majority of scientists deem unethical given the limitations of our knowledge.
It is illegal to do so in many countries and…
The [US Government Recombinant DNA Advisory] Committee said that in no circumstances would it consider any request for government funds that would result in modification of the human germline.
In June 2001 the FDA communicated with the fertility clinics that were attempting ooplasmic transfer and told them to stop, indicating that such protocols would have to be undertaken under Investigational New Drug exemptions. The FDA letters cited concerns regarding the genetic abnormalities found in resulting children (including Turner’s syndrome and Pervasive Developmental Disorder), the lack of oversight, the paucity of safety data, and the resulting permanent changes to the human genome.
Understanding this history is particularly important right now as the UK contemplates granting the world’s first regulatory approval for a variation of these techniques, mitochondria replacement, which would also modify the human germline. Biopolitical Times (1, 2, 3) and many others (1, 2, 3) have pointed out that mitochondria replacement is unneeded to prevent future children affected by mitochondria disease , would be extraordinarily risky for any resulting children, and would violate widespread legal prohibitions and a globally observed understanding against human germline engineering.
Back in 2001 no one would have guessed that the UK would be the country to go against the worldwide consensus against such human experimentation. Lord Robert Winston, Professor of Science and Society and Emeritus Professor of Fertility Studies at Imperial College, told the BBC: “There is no evidence that this technique is worth doing... I am very surprised that it was even carried out at this stage. It would certainly not be allowed in Britain.” Additionally, the Human Fertilisation and Embryology Authority (HFEA), the UK’s regulatory agency for reproductive medical activities, said that it would not license the technique because it involved altering the germline.
Despite or perhaps because of the publicity around the current controversy, the old Daily Mail article continues to circulate and lead to commentaries based on the false assumption that this just happened. Just how much confusion has this created? Here are some of the recent re-postings and commentaries based on the 2001 article:
The hosts of the recent Al Jazeera debate ‘The Baby Blueprint’ were understandably confused about the issue when they noted that they had just learned from an article that 30 genetically modified babies were born last year.
Misinformation has been a hallmark of the debate around mitochondria replacement. Adding the accurate date to the Daily Mail article could help alleviate some of the confusion. Hopefully this will be remedied soon.
An important and timely article, “The British Embryo Authority and the Chamber of Eugenics,” appears this week in The Huffington Post. Stuart Newman, Professor of Cell Biology and Anatomy at New York Medical College, discusses the Human Fertilisation and Embryology Authority’s (HFEA) public consultation on the social and ethical considerations of “mitochondria replacement,” and takes the agency to task for entertaining the legality of a procedure that he sees as inherently unsafe and problematic.
Unlike in vitro fertilization (IVF), which “generates embryos from the biological components that evolved to serve this function,” mitochondria replacement radically alters an embryo through the introduction of genetic material from a third person, piecing together various parts of cells in novel ways. Newman notes that humans are the product of evolution, not design, and that it is a fundamental misconception to believe that billions of years of complexity could be tweaked with any predictable outcome.
Furthermore, Newman separates the question of the desirability of avoiding mitochondrial diseases, which affect 1 in 5,000-10,000 people, from a supposed right to have one's own children by any means necessary, and points out that a technique to modify people who do not yet exist should not be conflated with medical treatment for actual sick people.
The attempt to improve future people is not medicine, however, but a new form of eugenics. In its willingness to risk producing damaged offspring by modifying embryos' genomes, this "correctionist" eugenics goes even beyond the "selectionist" version of the forced sterilization programs for criminals and others considered biologically inferior conducted in the United States and Europe throughout most of the 20th century (and brought to an extreme in Nazi Germany).
Activities that are clearly covered by the Nuremberg Code prohibiting nonconsensual human experimentation are recast by proponents of gene-altering technologies as within the alleged rights of parents to exert proprietary control over the characteristics of their prospective offspring.
Why would the HFEA toy with a technology imbued with such problematic implications for individuals and society? Newman concludes with some words of caution:
The ironic lesson of the new drive toward DNA-based eugenics (of which the mitochondrial replacement techniques would be the thin end of the wedge), is that despite its being the special initiative of an avowedly progressive sector of biomedicine, it actually brings together some of the most regressive strains of traditional and modern society: valuation of people according to their biological characteristics, parental proprietorship, the marauding entrepreneur and evolution denialism.
The HFEA's members may imagine that they are taking cautious steps toward a genetically brighter future, but in actuality they are drawing on darker forces promoting the misuse of technology with clear potential for individual and social harms.
Many of the scientists currently working on mitochondria replacement are eager to promote their techniques as safe and ready to move to human clinical trial; a cautionary look, such as this, from notable scientists is thus extremely valuable and timely.
Posted by Gina Maranto, Biopolitical Times guest contributor on March 4th, 2013
The unfortunate truth is that discredited ideas never do die, they just rise again in slightly altered forms—witness eugenics. Despite the horrors perpetuated in its name, including forced sterilization and the Holocaust, the eugenic impulse is with us still. One of the forms it takes is schemes for “improving” offspring through the selection and manipulation of embryos.
In the last year or so, one neo-eugenic advocate in particular has been garnering media attention. He’s Julian Savulescu, holder of an array of titles, including an endowed chair and directorship of a center at the University of Oxford funded by the Uehiro Foundation on Ethics and Education.
Savulescu also edits the Journal of Medical Ethics, which affords him significant influence in guiding academic discourse and research in the field. The theme of the journal’s February 2013 issue is “the biomedical enhancement of moral status,” a project that would surely count as eugenic in nature.
Writing about himself in third person in his online CV, Savulescu lays claim to the vanguard of neo-eugenics, proclaiming that
For the last 10 years, through a series of publications (4 monographs, 1 special journal issue, 29 book chapters, 45 articles), Savulescu has led the debate on the ethics of genetic selection and human enhancement.
Not one to hide his light under a bushel, he goes on to tout his statistics: He grants top spot in his list of publications to a 2001 Bioethics article, “Procreative Beneficence: Why We Should Select the Best Children,” adding the gloss
27 articles responding to it, 14 exclusively. Landmark article arguing selection of children is not only permissible, but morally desirable. Introduced novel concept of Procreative Beneficence (cited by 137 – high citations are uncommon in the Humanities). 5th Highest Accessed Bioethics article 2010.
Posted by George Estreich, Biopolitical Times guest contributor on February 28th, 2013
A recent episode of The Today Show, on which I first commented here, profiles an expectant couple, Jason and Robin Vosler, who tell the audience about the results of their prenatal test on air. They explain that their fetus does not have Down syndrome: “We’re safe,” Ms. Vosler said. Host Matt Lauer then reveals to them something they hadn’t known – that their fetus is male.
Though nominally a human interest story, the segment was functionally an infomercial for Sequenom’s MaterniT21Plus, one of the new noninvasive prenatal tests (NIPT) for Down syndrome and other chromosomal conditions. The couple testified to the test’s value, as did NBC’s Chief Medical Editor, the woman’s OB-GYN, and the Chief Medical Officer of Sequenom. No competing test was mentioned, and MaterniT21Plus was compared favorably to invasive diagnostic tests (amniocentesis and chorionic villi sampling).
In my previous blog post, I discussed the conflicted view our society holds of Down syndrome and disability. In this one, I want to consider several key issues: the way NIPT is presented in the diagnostic situation; the way medical authority is used, or misused, to sell the technology to both patients and the public; the question of sex selection; and the challenge of how to respond publicly to these problems.
For years now, parents have advocated for a genuinely balanced approach to the presentation of Down syndrome, whether in prenatal or postnatal contexts. That approach would neither shy away from potential complications, nor frame a child with Down syndrome as an avoidable mistake.
The United Nations Special Rapporteur on Torture (SRT) issued a report this month about practices that are justified as health care, but that actually constitute cruel, inhuman or degrading treatment. The report breaks new ground with its acknowledgment that torture and human rights violations can take place within medical settings, that it is not merely a historical problem, and that the LGBTQI community is often targeted for such abuses.
Section 88 of the 23-page report reads,
The Special Rapporteur calls upon all States to repeal any law allowing intrusive and irreversible treatments, including forced genital-normalizing surgery, involuntary sterilization, unethical experimentation, medical display, “reparative therapies” or “conversion therapies”, when enforced or administered without the free and informed consent of the person concerned. He also calls upon them to outlaw forced or coerced sterilization in all circumstances and provide special protection to individuals belonging to marginalized groups.
Forced sterilization has previously been recognized as a human rights violation that most severely affects women from marginalized populations. The Open Society Institute’s (OSI) 2011 report, Against Her Will: Forced and Coerced Sterilization of Women Worldwide, has been an invaluable resource in that effort. It specifically brought attention to the coerced sterilizations of Roma women, women living with HIV, and women with disabilities, and noted that medical personnel are rarely held accountable for these human rights abuses. OSI’s publication helped inform the SRT’s report on all of these groups and is referenced throughout.
The recognition that transgender and intersex people are also disproportionately targeted for coerced sterilizations has previously received less attention and is an important addition to the SRT’s new report. The inclusion of a transgender perspective may well be thanks to Micah Grzywnowicz, an activist who has been fighting against the human rights abuses of transgender people for years. Sex reassignment surgery and sterilization remain requirements for legal gender recognition in most countries around the world today (including 20 American states and 29 European countries).
The inclusion of people with intersex conditions in the SRT’s report is due in large part to Advocates for Informed Choice (AIC), an organization that fights for the civil rights of children born with variations of sex anatomy. Intersex children are often subjected to involuntary genital-normalizing surgery and sterilization without their informed consent in an attempt to "fix" their sex. AIC was thrilled to see this practice recognized as a human rights abuse in the final report, and has high hopes for what may come next.
This is a very significant development. The SRT is an influential voice in setting international human rights norms, and governments around the world will look to this report in creating their own laws and policies.
Both AIC Executive Director Anne Tamar-Mattis and Micah Grzywnowicz will attend the UN Human Rights Council in Geneva in early March to continue to educate human rights officials on the abuses that the LGBTQI community faces around the world.
A lack of conformity to traditional gender norms should not be grounds for dehumanizing treatment. Though the mere existence of this report does not ensure that forced genital normalizing surgeries and sterilizations will end globally, the setting of a new international standard is important. It provides a valuable tool for activists, and will increasingly pressure states to honor the human rights of all of their citizens.
BGI, the Chinese genome-sequencing behemoth, has been attracting attention from feature writers over the last couple of weeks (MIT Technology Review, Business Week, Financial Times). That's only going to get more intense, it seems, as BGI delves deeper into the long-standing controversy about inherited intelligence. A Wall Street Journal article on February 15th, by Gautam Naik, was headlined:
A Genetic Code for Genius?
with the subhead:
In China, a research project aims to find the roots of intelligence in our DNA; searching for the supersmart
The project is being run by Zhao Bowen, described in the first sentence of the WSJ story as "a 20-year-old wunderkind." But it's misleading to think of it as a purely Chinese effort. MIT Technology Reviewdescribes BGI as "the enabler of other people's ideas," with this as a major example. BGI is doing the sequencing and genetic comparison, and picking up half the tab, with a hefty contribution from the Shenzhen government, but the project was conceived by Stephen Hsu, now of Michigan State, and substantially relies on samples gathered by Robert Plomin, of King's College, London.
Hsu has been discussing genes and intelligence for several years, since he was a physics professor at the University of Oregon; we gave him some "mild ridicule" in 2011, noted his connection with BGI and warned that we should keep an eye on this. He made no bones about his desire to identify the alleles for intelligence, select for them, and work on "possible near term genetic engineering for intelligence."
Plomin has been working on IQ for decades. As long ago as 1976, he published an letter on "Heritability of IQ" in Science, responding (as did many others) to M.W. Feldman and R.C. Lewontin. In 1994, he and others claimed to have found "DNA markers associated with high versus low IQ" and "the genetic basis of complex human behaviors." (A 2010 survey, however, found there had been no "reliably reproducible contributions from individual genes"). In the same year, he was also one of the signatories of the Wall Street Journalop-ed "Mainstream Science on Intelligence," which weighed in on the Bell Curve controversy, essentially supporting the book and its inflammatory suggestions about the "intelligence gap" between racial groups in U.S. society.
In 1998, Plomin claimed to have found an intelligence gene, though admitting it only accounted for "about 2 percent of the variance, or 4 I.Q. points." In 2000, he was leading a research team that claimed to be "homing in on the genes for genius." Since then he seems to have been frustrated by the "missing heritability" problem — the failure to find genes that explain inheritance of specific attributes. (GeneWatch published a useful survey of his career in November 2011.) He continues to work on twin studies and supplied blood samples of high-IQ people to BGI.
The concept of general intelligence (g) itself has been for years, and remains, intensely controversial, as indeed are twin studies. Moreover, the search for the supposed genetic basis of complex human behaviors keeps coming up dry. People do, however, keep looking, as the new book Genetic Explanations: Sense and Nonsense (Harvard University Press, 2013) examines in detail. Jeremy Gruber, who edited the book with Sheldon Krimsky, told the Wall Street Journal that there are real dangers in this kind of approach to investigating intelligence, which has been used in the past
to target particular racial groups or individuals and delegitimize them. I'd be very concerned that the reductionist and deterministic trends that still are very much present in the world of genetics would come to the fore in a project like this.
Zhao Bowen, however, is undaunted. He's been working on this since 2010, when he was 17; his plan then was to sequence the genes of 1000 of his highest-achieving classmates. That didn't come off, but connecting with Hsu and Plomin must have been a dream come true. His team is now comparing the genomes of 2200 high-IQ people with several thousand random people, and he seems to be very confident:
"The genetic basis of intelligence has been ignored for a very long time," says Mr. Zhao. "Our data will be ready in three months' time."
Whatever they find is all too likely to trigger a flurry of ill-informed headlines about the genes of geniuses and the limitations of the rest of us. This could even lead to a new round of advocacy for eugenics, whether in a state-sponsored or strictly commercial implementation. We'd better be ready.
After five years of denials, Israeli government officials have admitted to targeting Ethiopian Jewish immigrant women with long-acting contraceptive injections without their consent. Most of the women were either coerced into accepting the Depo Provera injections while living in Israeli-run transit camps in Ethiopia, or were unaware that the injections produced temporary sterilization.
This controversy first surfaced in 2008, when Sebba Reuven interviewed 35 Ethiopian women awaiting immigration to Israel. Some of their stories were included in a report by Israeli investigative journalist Gal Gabbay that aired several weeks ago on Israeli Educational Television. One Ethiopian woman explained:
We said we won’t have the shot. They told us, “if you don’t you won’t go to Israel…you won’t get aid or medical care.” We were afraid…We didn’t have a choice. Without them and their aid we couldn’t leave there. So we accepted the injection. It was only with their permission that we were allowed to leave.
After arriving in Israel, the Ethiopian immigrants still received Depo Provera in disproportionate numbers in the HMOs providing health care services. According to a report by Hedva Eyal at Isha L’Isha, a feminist organization in Haifa, among the 4833 Israeli women injected with Depo Provera between 2005 and 2008, 57% were of Ethiopian origin—yet Ethiopians comprise less than 2% of the population. Over the past 10 years, Ethiopians in Israel have experienced a 50% decline in birthrate.
Women’s groups in Israel were alerted to the situation in 2008, when Rachel Mangoli, who runs a day care center for 120 Ethiopian children in a suburb of Tel Aviv with a large Ethiopian community, observed that she had received only one new child in the previous three years. According to Mangoli:
I started to think about how strange the situation was after I had to send back donated baby clothes because there was no one in the community to give them to.
In 2008, when queried about the discrepancy between Depo Provera use among Ethiopians and other groups, Israeli Health Minister Yaacov Ben Yezri reportedly explained that Ethiopian women had a “cultural preference” for contraceptive injection. However, World Health Organization reports on contraceptive use in Ethiopia reveal that this is not the case; in fact, three-quarters of women in Ethiopia using birth control choose the contraceptive pill. Ethiopian-born social worker Mekonen-Dego told the Los Angeles Times that “the suggestion Ethiopian women can’t be trusted with responsibility for their own health is outrageous.”
Haaretz reported this week that Health Ministry Director General Prof. Ron Gamzu has now ordered four health maintenance organizations to discontinue prescriptions of Depo Provera for women of Ethiopian origin if “for any reason there is concern that they might not understand the ramifications of the treatment.” Sharona Eliahu Chai, a lawyer for the Association of Civil Rights in Israel (ACRI), whose complaint prompted Gamzu’s response, said:
Findings from investigations into the use of Depo Provera are extremely worrisome, raising concerns of harmful health policies with racist implications in violation of medical ethics.
The use of Depo Provera among Ethiopian immigrants is particularly disturbing because its side effects—including depression, dizziness, abdominal pain, loss of bone density, and possibly increased breast and cervical cancer rates—are well-known. To impose it without proper consent amounts to a potentially harmful policy of compulsory contraception.
The Depo Provera scandal takes place against the background of the Israeli government pro-natalist policies that provide incentives for other (fairer) Jewish women to produce more children, in part as a demographic race with Palestinians. Unfortunately, this contradictory approach to reproductive policy is in keeping with the social and ethnic stratification of Israeli society. In The Chosen Body (2002), Meira Weiss describes Israeli “body politics” that put white Ashkenazi (European Jewish) male bodies at the top of the social hierarchy. In descending order, they are followed by Mizrahi (Middle Eastern Jews), and then by Ethiopian Jews. Only Israeli Arabs, non-Jewish immigrants, and Palestinians in the Occupied Palestinian Territories rank lower.
The coerced prescription of Depo Provera to Ethiopian Jews also stems from broader dynamics in Israeli society. These include lingering questions voiced by a number of Ultra Orthodox Israeli rabbis and others about whether Ethiopian immigrants are actually Jewish; concern that African immigrants in general are a drain on the system and will, as Prime Minister Benjamin Netanyahu put it, “threaten our existence as a Jewish and democratic state”; and widespread discrimination against Ethiopian Jews, who often live in marginalized and impoverished communities and who face social barriers to equal access to jobs, education and housing.
World-wide, the struggle for reproductive and social justice demands attention. The Israeli Health Ministry’s revised directive about the use Depo Provera is a small step in the right direction. However, the discriminatory policies of the Israeli government, toward various ethnic and religious groups, require continued scrutiny.
California has a long and deeply troubling history of eugenics that includes the forced sterilization of tens of thousands of men and women. In 2003, the state Senate passed a resolution urging “every citizen of the state to become familiar with the history of the eugenics movement, in the hope that a more educated and tolerant populace will reject any similar abhorrent pseudoscientific movement should it arise in the future.”
Unfortunately, the resolution did not include concrete mechanisms for achieving this important goal, and most Californians still know little or nothing about their state’s eugenic legacies.
A group of California high school students has now started an online petition at Change.org to help turn the resolution’s aspiration into reality. The petition outlines specific and powerful recommendations for teaching the long-ignored history of eugenics in meaningful ways.
The students want the California Board of Education to change the standards for U.S. history textbooks and the language of the California educational code so that curricula on sterilization and eugenics are introduced in public high schools. They offer specific recommendations for the curricula, which include thinking about why eugenics was considered a viable solution to societal problems, looking at different eras of sterilization in the state (including very recent occurrences), thinking about how the history is both intertwined with and separate from the eugenic practices of Nazi Germany, and thinking about the ongoing relevance of eugenics for genetic technology today.
In California as elsewhere in the United States, eugenic views and practices were maintained by respected medical practitioners in the name of morality and science. The students recognize that this framework is particularly dangerous because of its power to affect opinion and justify institutionalized discrimination; they also recognize that this thinking is not limited to the past. They quote State Attorney General Bill Lockyer, who was forthright about the matter in an official 2003 letter acknowledging California’s eugenic history.
“At the Dawn of an era when cloning and genetic engineering offer both great promise and great peril, we must learn from our history, teach our children about our past and be mindful of our future.”
The students’ effort to change the state’s official history curricula and textbooks may seem daunting, but the passage in 2011 of California’s FAIR (Fair, Accurate, Inclusive, Respectful) Education Act – which mandates the inclusion of contributions of people with disabilities and lesbian, gay, bisexual, and transgender people in social studies curricula and textbooks – has set an important precedent. The FAIR Education Act demonstrates that what kids are taught can be changed to more closely reflect the truth, and the effort to spread awareness about eugenics can follow a similar model. California public high schools should be required to use U.S. history textbooks that don’t ignore these issues.
Eugenics is unfortunately not merely a concern for the history books. Shockingly, forced sterilizations have occurred in very recent years in some California prisons. And potential misuses of new genetic and reproductive technologies raise concerns about a “new eugenics.” Learning from the mistakes of the past, and acknowledging the harm they are causing in the present, is the best way to avoid repeating injustices down the road.
Now seems to be a ripe moment for addressing the legacies of eugenics in the U.S. There are several ongoing efforts to offer compensation to victims of forced sterilizations around the country, including the recent bills in Virginia and North Carolina. In California however, where none of the estimated 20,000 victims of state-sponsored sterilization are still alive, educational reform could be the most effective way to address these past wrongs.
Californians deserve to know the truth about their state’s – and their country’s – role in the history of eugenics. The victims of forced sterilization deserve to have their story told. This is a critical moment to learn about the complexities and possibilities of justice, equality, and human rights.
The student petition is one of the most uplifting and creative ways to grapple with this painful history that I have seen. Please consider helping these students’ effort and sign the petition today.
One of many protests against forced sterilization in Sweden, Stockholm Pride Parade, 2010
The law in Sweden that for more than 30 years had required transgender people to undergo sterilization before they could be legally recognized as another gender has been deemed unconstitutional and in violation of the European Convention on Human Rights.
A year ago, the government was unable to repeal the law because a small conservative group managed to block the effort. International human rights activists fought back, gaining media attention and putting significant pressure on the country. The European Council’s Human Rights Commissioner declared that the law did in fact violate human rights, and an amendment was proposed by the Swedish National Board of Health and Welfare.
Finnish center-right MEP Sirpa Pietikäinen told the European Parliament LGBT Intergroup, “This isn’t about LGBT rights; it’s about human rights and torture, cruel, inhuman and degrading treatment.”
Green MEP from Spain, Raül Romeva i Rueda, added: “The government’s decision is rather surprising: forcibly sterilising transgender people is recognised as inhumane across the political spectrum. It’s barbaric, outdated and highly unnecessary—not to mention against Sweden’s human rights commitments.”
Amanda Brihed, who underwent forced sterilization when she had male-to-female realignment, has become a public advocate for transgender rights. In a recent interview with Vice, she described the social environment transgender people face in Sweden.
“We still aren't considered to be human beings. Our protection against discrimination, threats, violence and hate-crimes is still very limited. We're not even protected in labor laws. Forced sterilization is just the tip of an iceberg.”
Brihed is one of more than 500 people who were sterilized under Sweden’s law; she is part of the class action and is hoping to receive some compensation from the state. Ulrika Westerlund, head of the Swedish Federation for Lesbian, Gay, Bisexual and Transgender Rights, has suggested that 200,000 kronor ($31,000) per person would be an acceptable amount. In 1999, Sweden offered 175,000 kroner to those who had been forcibly sterilized under a eugenics program that wasn’t abolished until 1996.
In the United States, though sterilization is not required before gender reassignment surgery, efforts to monetarily compensate victims of state-sponsored eugenic sterilization have thus far hit dead ends. Are there lessons to be learned from the successes in Sweden?
The fight for humane treatment of a minority group must walk the fine line of simultaneously voicing the concern of one specific group (thus outlining the boundaries of what constitutes that group) while making the case that there is no fundamental difference between that group and the human community at large; that they are just as deserving of human rights as others. The protests in Sweden and around the world against the dehumanization of transgender people have walked this line with deft skill.
The new ruling in Sweden is a reminder of the power of the human rights framework. The United States has historically not given much weight to international human rights conventions and has lagged on establishing guidelines for new technologies, medicines, and practices.
George Church hit a nerve when he recently discussed re-creating Neanderthals with an "adventurous human female" surrogate, in Der Spiegel. The media attention rapidly became fierce, with dozens of outlets carrying the remarks. Yesterday, Church told the Boston Herald that the whole kerfuffle was based on "poor translation."
As for cloning a Neanderthal, he said, "I'm certainly not advocating it
… I'm saying, if it is technically possible someday, we need to start
talking about it today."
It's good to hear Church disavowing the idea of using genetic
engineering, synthetic biology and human surrogates to create a
Neanderthal clone baby, at least for the time being. But it's
disingenuous of him to shift all the blame onto the translation process.
The phrase that clearly got the most attention was "adventurous female
human" — and that comes straight from the prologue of his own recent book, Regenesis: How Synthetic Biology Will Reinvent Nature and Ourselves (co-authored with Ed Regis, published in October 2012):
If society becomes comfortable with cloning and sees value in
true human diversity, then the whole Neanderthal creature itself could
be cloned by a surrogate mother chimp — or by an extremely adventurous
Is Church personally looking for a human surrogate to gestate a
Neanderthal clone, right this minute? No. Is he willing to openly
advocate for the scenario that he describes in some technical detail?
Not forthrightly, and both in his book and in the interview that sparked
the recent furor, he includes "ifs" and caveats. Does he think that the
process will be technically feasible in the foreseeable future?
Emphatically yes. He's been talking about this and similar projects for
several years. For example:
Dr. Church said there might be an alternative approach that would
"alarm a minimal number of people." The workaround would be to modify
not a human genome but that of the chimpanzee, which is some 98 percent
similar to that of people. The chimp's genome would be progressively
modified until close enough to that of Neanderthals, and the embryo
brought to term in a chimpanzee.
"The big issue would be whether enough people felt that a
chimp-Neanderthal hybrid would be acceptable, and that would be broadly
discussed before anyone started to work on it," Dr. Church said.
Is there a gene for mass murder? Of course not. But within a week of the December 14 elementary school massacre in Newtown, state authorities were planning to do genetic tests on the tissues of the man who committed the horrific crime and then killed himself. There are real risks involved in this, and few — if any — scientific merits.
Lanza's DNA will be analysed not because it will be useful but because it can be analysed. The ease of DNA sequencing will lead to a dangerous temptation to focus on minor, even spurious, genetic correlations at the expense of non-genetic factors that are more influential.
But aside from being a distraction, can sequencing Lanza's genes do any harm? Why not give them a look?
As a society, we have a record of attributing criminal tendencies to biological traits, and basing social policy on the results. Remember phrenology? Remember eugenics? Another false scientific theory that is particularly relevant is the "criminal chromosome." The 1961 discovery that some men have two Y chromosomes led to the suggestion that they must be doubly male — "super male" — and therefore prone to aggression. In 1968 the New York Times and other major publications jumped on this bandwagon. Social consequences soon followed:
Newborn screening programs were set up in several states to identify baby boys who were XYY.
In 1970, President Richard Nixon's personal medical advisor proposed testing the genes of every American child between ages six and eight, in order to identify those with "criminal potential." He suggested that "hard-core 6-year-old" children be sent to "camps" where they could learn to be "good social animals."
In the same year, the eminent geneticist H. Bentley Glass told the annual meeting of the American Association for the Advancement of Science that he looked forward to the time when pregnant women would be required by the government to abort XYY "sex deviants."
A psychologist at Johns Hopkins Hospital tried to treat 13 XYY boys and men with behavior problems by chemical castration. It didn't work, but its side effects included weight gain — and suicide.
Most of this happened after there was expert testimony and published research showing — correctly — that XYY men were not more likely to be criminal than XY men.
In the wake of a tragedy like the Newtown massacre, it may be understandable to grasp at simple explanations, and to fall prey to spurious correlations. But to think that genes will tell us who to fear is a serious misunderstanding of genetic science. And history tells us that such erroneous ideas are extremely likely to lead to demonizing some group of people, whether identified by the shape of their head or the color of their skin or the religion of their ancestors — or the particular configuration of their DNA.
The Center for Genetics and Society has sent a letter strongly recommending against changing the United Kingdom law that – like those in dozens of other countries – prohibits procedures that would alter the genes we pass on to our children. Please consider adding your voice to this effort here.
A research team at the United Kingdom’s Newcastle University is working on techniques that produce human eggs containing genetic material from two women, and using them to create human embryos – and potentially children – with DNA from three parents. Children born after such “mitochondrial replacement” procedures would pass these genetic changes to their children and all subsequent generations.
Testing the procedure in humans is currently illegal in the UK because it would constitute inheritable genetic modification – that is, it would irreversibly alter the human germline. Over 40 countries prohibit human germline engineering because of its profound social and ethical consequences, but the Newcastle researchers are eager to change the UK law so that they can bring their technique to clinical trial.
Mitochondrial replacement would not alter genes in the nucleus. But the prohibition against human germline engineering represents a critical line in the sand. If the Newcastle proposal to alter mitochondrial genes is approved, we will have crossed that line; it will be harder to argue against other inheritable genetic modifications in the future.
Like the research team from Oregon Health and Science University whose research was recently in the headlines, the Newcastle scientists stress that their procedures are worthwhile because they would enable women with unhealthy mitochondria to have a (mostly) genetically related child without mitochondrial disease. Inherited disease caused by mitochondrial DNA is relatively rare, affecting about 1 in 5,000-10,000 births. Women at risk of having an affected child have several other (far less experimental) options available to them, so these extreme procedures would be considered only in a very small number of cases. Because mitochondrial DNA and nuclear DNA interact with each other consistently and in complex ways that are imperfectly understood, the health risks to any future children created using these procedures would be very large. And these future children would obviously be unable to give their consent.
The Human Fertilization and Embryology Authority (HFEA) ruled last year that a minimum number of further tests would be required before the safety of mitochondrial replacement in humans could be assessed (section 5.4). Even though these tests have not yetbeen completed, the HFEA is moving forward in an effort to gauge the public’s point of view on the controversial technology. They have launched a public consultation to debate the ethical and social implications of the two novel technologies under discussion: pronuclear transfer (PNT) and maternal spindle transfer (MST).
HFEA’s consultation website has information on the science behind the new techniques being proposed and on various ethical concerns. The results of the consultation will be passed on to the Secretary of State for Health in the UK who will make the next decision as to whether these technologies can move to clinical trial in humans.
Please voice your thoughts or concerns on these issues by submitting them to the HFEA’s public consultation by December 7. For more information on the many social and ethical implications of mitochondrial transfer, please see the letter the Center for Genetics and Society has submitted to the Chair of the HFEA and to the Secretary of State for Health in the UK here. Please also check back for updated information on our website.
Posted by George Estreich, Biopolitical Times guest contributor on November 13th, 2012
One of the many mini-scandals in the recent Presidential election erupted when Ann Coulter tweeted a reference to President Obama as a “retard.” As the father of a sixth grader with Down syndrome, I found the tweet simultaneously sickening and reassuring. Sickening, because of the ubiquity of the word; reassuring, because of the pushback. Coulter clearly assumed that her use of the word would be shocking enough to generate attention, but not shocking enough to incur any cost. She was clearly wrong.
On disability as on many other issues, our mores are changing with unbelievable speed. What was acceptable last year is less so this year, and taboo next year. Most heartening of all after Coulter’s blunder was the public reply made by John Franklin Stephens:
I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow. I am not either of those things, but I do process information more slowly than the rest of you. In fact it has taken me all day to figure out how to respond to your use of the R-word last night…
Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.
No one overcomes more than we do and still loves life so much.
Come join us someday at Special Olympics. See if you can walk away with your heart unchanged.
A friend you haven’t made yet, John Franklin Stephens Global Messenger
In a world where people with disabilities have made such strides, what are we to make of the spate of new prenatal tests that claim to identify fetuses with chromosomal conditions early in pregnancy? There is no easy answer, but it is hard to deny the tension between their implicit message and the one delivered by Mr. Stephens.
Selling at Sequenom
One of these tests is made and marketed by a company called Sequenom.
Posted by George Estreich, Biopolitical Times guest contributor on October 17th, 2012
Since I started researching and writing about the new fetal gene tests that can detect Down syndrome and other disorders from a maternal blood sample early in pregnancy, the ads for Sequenom's MaterniT21 have been appearing regularly on my computer screen. Whatever you think about Sequenom, they have their online marketing together.
I'm writing about the new fetal gene tests not because I oppose them in some blanket way, but because I think that a robust conversation is necessary if our medical advances are to help us. In that conversation, we need to talk not only in narrow terms about the relative efficacy of these tests, but about the assumptions and wishes to which they appeal, the vision of health they present, and the broader social consequences of that vision.
And because the tests in question are products, it’s worth looking at the way these products are sold. The companies know this: their websites are slick, expensive-looking, carefully worded. These are acts of persuasion, subordinate to the goal of making a profit; and whether we like it or not, they are a part of our society's conversation about biomedicine, not outside it.
So in the spirit of continuing that conversation, I'll begin with a response to my last post, where I took issue with the idea that "90% of all fetuses with Down syndrome are aborted." I wrote that in fact 90% of all fetuses positively diagnosed are aborted. However, as I was quickly informed, even in the case of a positive diagnosis, the number of terminations ranges widely, from 50 to 90%, depending on the sample. These points were offered as part of a spirited Facebook discussion among bloggers, and though I (weakly) protested that the 50-to-90-percent thing was actually a figure I linked to, I accept the correction.
The numbers matter not only for the obvious reason that our deliberations should be based on the best data available, but also because they suggest the complexity of the situation. The 90% figure – whether claimed for all fetuses, or all fetuses diagnosed – implies a solid consensus, a slam dunk, almost like a recommendation. 67% is something else: it suggests a process of deliberation (as does the widespread refusal of amniocentesis, which only 2% of women currently use). By extension, it also suggests that a test may not automatically result in “peace of mind.”
It’s also important to realize that not all prenatally identifiable conditions are the same, and that prospective parents do not react the same way. These are not merely decisions about biology, but about values. So with Tay-Sachs disease, for example, there is far greater agreement among prospective parents about the need for prenatal testing and selective abortion.
This is unsurprising: Tay-Sachs is not only invariably fatal and incompatible with long life, but it is inheritable within a relatively small community. That means that there is likely to be shared experience of the disease, and an awareness of its possibility. Down syndrome, however, except in the very rare case of translocation trisomy 21, is not inheritable: it occurs at random. Therefore, it is far less likely that a prospective parent will have direct knowledge of Down syndrome.
What, then, will fill the gap? To ask the larger question: How will the conditions we seek to prevent be portrayed? And, as a corollary: How will the need to sell a product shape the portrait?
Posted by Center for Genetics and Society on September 28th, 2012
A video recording is now available of this public event, held at the University of California at Berkeley School of Law on August 28, 2012.
much of the 20th century, California was at the forefront of eugenic
ideology and practices in the United States, and holds the dubious
distinction of being the state with the highest number of eugenic
sterilizations performed under the authority of law – some 20,000
procedures between 1909 and the mid-1950s. Coerced sterilizations
continued in public hospitals into the 1970s, and it has recently come
to light that in very recent years, women prisoners in California have
been sterilized without their consent or knowledge. Today, California is
a leader in research and services related to human genomics and
assisted reproductive technologies. Speakers at this public event considered the long history of eugenics in California and explored
continuities and discontinuities in the uses and misuses of genetic
ideas and practices.
Welcome: Dean Christopher Edley, Berkeley School of Law
Moderator: Troy Duster, Chancellor’s Professor and Senior Fellow at the Warren Institute for Law and Social Policy, UC Berkeley
Eugenic Sterilization in California: Stories and Statistics
Miroslava Chávez-García, University of California at Davis and Alexandra Minna Stern, University of Michigan
provide an overview of the patterns of the 20,000 eugenic
sterilizations performed in California state institutions from 1909 to
1979, with close attention to race, gender, class, and diagnosis. We
will also highlight stories of sterilization victims and the ways in
which they attempted to challenge the state's authority to control and
contain their reproductive rights. As we will demonstrate, the process
had a devastating impact on the victims.
¿Más Bebés? (documentary film)
Renee Tajima-Peña, University of California at Santa Cruz; Virginia
Espino, University of California at Santa Cruz, and Kate Trumbull,
The feature-length documentary ¿Más Bebés?
(working title) investigates the history of Mexican American women who
allege they were coercively sterilized at Los Angeles County-USC Medical
Center during the 1960s and 70s. Many spoke no English, and testified
that they were prodded into tubal ligations during active labor. The
sterilizations triggered the 1978 class action lawsuit, Madrigal v.
Quilligan, and a protest campaign that galvanized the Chicana feminist
Eugenics in California Women’s Prisons Today
Kimberly Jeffrey and Courtney Hooks, Justice Now
Justice Now has been working collaboratively with people in
California’s women’s prisons to document how prisons violate the
international right to family and function as a tool of reproductive
oppression. Presenters will place a spotlight on personal experience
with as well as the systemic pattern of destruction of reproductive
capacity of women of color and gender variant people in California
women’s prisons through several state-sanctioned policies, including
forced and coerced sterilizations (e.g. the illegal and routine
sterilization of hundreds of people in prison during labor and
delivery), and other violations of safe motherhood and reproductive
Should We Worry About a New Eugenics?
Marcy Darnovsky, Center for Genetics and Society
fast-developing genetic and reproductive technologies offer significant
benefits, but can also be misused in ways that exacerbate existing
inequalities and create entirely new forms of injustice. California, a
hotbed of eugenic advocacy in the last century, is today a center of
biotechnology research and commercial development and the assisted
reproduction sector, as well as home to some troubling
techno-enthusiastic ideologies. Our efforts to confront California's
eugenic history can help prevent these dynamics from veering toward a
This event was co-sponsored by the Center for Genetics and Society and the UC Berkeley Haas Diversity Research Center, the UC Berkeley School of Law, as well as the Institute for the Study of Societal Issues, American Cultures Center, Disability Studies Program, Disabled Students Program, Center for Reproductive Rights and Justice, and the Center for Race and Gender.
Co-coordinators: Marcy Darnovsky (firstname.lastname@example.org) Alexandra Minna Stern (email@example.com)
Advisory committee: Miroslava Chávez-García, Troy Duster, Tony Platt, Sue Schweik
They look like models from a Cialis ad: healthy, prosperous, white, late thirties or early forties. If you were guessing, you’d say the man was an executive in a nonmedical field, that the wife has a professional degree but scaled her career back for family, and that they drove to the office together in a silver Lexus SUV. His hobby is golf, hers is scrapbooking. You see them over the doctor’s shoulder – he’s a blurred white coat in the foreground – and they look concerned but reassured, as if they have just received good news about a solvable problem. The husband’s arm is positioned supportively behind the woman’s chair. There are no markers of political and religious affiliation: their story is a matter of suggestion and erasure, underpinned by the certain fact of an extra chromosome. In this way, at least, it resembles the story of the condition they are clearly there to prevent.
That condition is Down syndrome, and the product isn’t a pill. It’s Sequenom’s MaterniT21plus, an early-pregnancy test described as “an in-office, noninvasive laboratory-developed test for trisomy 21, 18, and 13.” Perhaps because trisomies 18 and 13 are both rarer and incompatible with long life, only Down syndrome is described below the photograph. It’s a standard description, and it is a more than superficial improvement upon the slanted language, factual errors, and long lists of possible disease features that are fading, but still common, in contemporary descriptions of the condition. In this, the description, like the test itself, is very much of our time: over the past several decades, even as our ability to detect Down syndrome has increased, so has our acceptance of people with the condition, a fact reflected in the way we describe it.
And yet that description, like most descriptions of Down syndrome, has a context and a purpose. As such, it is inflected, ever so lightly, with the negative. The word “risk” (as opposed to, say, the neutral “chance”) appears four times, and in a way which subtly expands the pool of potential consumers: “The risk to have a child with Down syndrome does increase with the mother’s age, but mothers of all ages can have a child with Down syndrome.” “Your doctor may also recommend screening for Down syndrome if you have other risk factors such as a family history of Down syndrome.” The condition being risked, though initially identified as a “variation,” is also associated with “birth defects”; and the sense of risk is amplified by an insistence on randomness: “It is important to know that most cases of Down syndrome are not inherited. In fact, most cases of Down syndrome happen randomly by chance.”
It is, in other words, less a factual document than an act of persuasion. Though it speaks with the bland rhetoric of health and choice, and though it’s subtly done, at root it works the way most advertisements work: it engages our fears, then seeks to allay them. Down syndrome, in the world of the ad, is an abstract world of randomness and risk; MaterniT21plus is the answer.
What, then, is left out?
As ever, the actual lives of people with Down syndrome. It is not reasonable, of course, to ask Sequenom – whose continued profitability depends on the wishes of prospective parents to avoid Down syndrome – to show pictures from the latest Buddy Walk®. However, the likely effect of tests like MaterniT21 is to depopulate the Buddy Walks of the future. This isn’t a matter of evil, or prejudice; it’s just economics, and individual decisions adding up to social change.
It is crucial to note that those individual decisions are not lightly taken. Nor are they as common as is thought. As the writer Amy Julia Becker points out, the frequently-cited statistic that 90% of all fetuses with Down syndrome are aborted is factually incorrect. In fact, around 90% of all fetuses positively diagnosed are aborted – which is to say, women willing to undergo the invasive procedure of amniocentesis, with its small but real risk to the fetus, and to contemplate a second-trimester abortion. And yet the numbers of those with Down syndrome are considerably lower than they would otherwise be.
At present, an estimated 100,000 women a year have prenatal genetic tests. A recent article in Nature reports that the Sequenom test is expected to expand that number as much as thirtyfold – to 3,000,000. It is difficult to imagine that this will not affect the numbers of those with Down syndrome in the world. It is also likely that the widespread use of the test will affect our sense of what Down syndrome is.
For parents, advocates, and people with the condition, Down syndrome is not a mistake or a defect; it is a way of being human. But the very fact of a test, combined with the medical authority behind it, implies a different view. Its focus on whole-chromosome disorders strongly associates Down syndrome with other disorders which are either different, or more severe. More generally, as a prenatal test, it associates Down syndrome with other conditions which can be tested for –which is why, in discussions of prenatal diagnosis and selective abortion, it is common to see Down syndrome lumped in with utterly unlike conditions, including thalassemia, cystic fibrosis, PKU, Tay-Sachs, and Huntington’s disease.
These may seem like specialized concerns: matters for parents of children with Down syndrome like myself, for disability rights activists, and for all those of us miscast as Luddites. In fact, we should all be concerned, because Down syndrome is at the leading edge of prenatal genetic diagnosis – just as it was at the dawn of prenatal (non-genetic) testing. In the age of genomics, whole-chromosome conditions are only the beginning. Our ability to sample fetal DNA from maternal blood means that not only Down syndrome, but before long any condition with a genetic component, any “risk,” can be forecast.
How such advances will affect our understanding of human health remains to be seen, but the questions they raise are far from easy. When everything can be tested for, how will we determine what is pathological, and what is normal? For that matter, what will happen to the troubled idea of “normal” itself? When the interpretive ground is shifting, how will patients interpret complex results? What sense will they make of the avalanche of data, and in a failing health system, who will have the time to help them make that sense? When inheritable conditions are discovered, what obligations, legal and ethical, obtain between the patient, the doctor, and the company selling the test? The presence of difficult questions should not preclude the test’s existence or use: difficult questions are always present. But if the test is to be a genuine benefit to human health, the questions need to be faced.
In its webpage for health professionals, Sequenom describes its product with three adjectives: clear, convenient, compelling. The test is undeniably convenient, and will be compelling for many. Its implications, however, are anything but clear.
George Estreich received his M.F.A. in poetry from Cornell University. His first book, a collection of poems entitled Textbook Illustrations of the Human Body, won the Gorsline Prize from Cloudbank Books. His memoir about raising a daughter with Down syndrome, The Shape of the Eye, was published in SMU Press’ Medical Humanities Series. Praised by Abraham Verghese as “a poignant, beautifully written, and intensely moving memoir,” The Shape of the Eye was awarded the 2012 Oregon Book Award in Creative Nonfiction. Estreich lives in Oregon with his family.
Posted by Anna Hamilton, Biopolitical Times Guest Contributor on September 6th, 2012
Julian Savulescu, the Oxford University professor of ethics who has kept busy for a decade or more promoting his vision of “breeding better babies,” has taken his campaign to the UK edition of Reader’s Digest. His short article in the September issue, titled “It’s Our Duty to Have Designer Babies,” casts the bad-boy argument he relishes in a conventional and reassuring tone.
Savulescu’s vision is a genetic pick-and-mix in which parents choose to edit out certain “personality flaws” in order to obtain “ethically better children.”
Fancy a child who’s likely to be altruistic? Then look for a version of the COMT gene. Want them to be faithful and enjoy stable relationships? Avoid a variant of AVPR1A. Steer clear of a certain type of the MA0A gene, too—it’s linked to higher levels of violence in children who often suffer abuse or deprivation.
Indeed, when it comes to screening out personality flaws, such as potential alcoholism, psychopathy and dispositions to violence, you could argue that people have a moral obligation to select ethically better children. They are, after all, less likely to harm themselves and others.
One tired argument that Savulescu marshals is that to order up a future child’s personality and character is no big deal, since we’re already doing similar kinds of selection:
We’re routinely screening embryos and foetuses for conditions such as cystic fibrosis and Down’s syndrome, and there’s little public outcry.
This is an odd statement from a literate person who lives in a country in which a government agency – the Human Fertilization and Embryology Authority – has conducted a number of “public consultation” on controversial matters such as embryo screening, and the media regularly reports on them. And it’s difficult to believe that Savulescu is unaware of the many articles, books and conferences in which disability rights activists have voiced their concerns about prenatal testing. (See, for an early and classic example, The Disability Rights Critique of Prenatal Genetic Testing).
Savulescu takes head on, as from a Rhetoric 101 standpoint he must, the question of whether breeding smarter babies or ethically superior babies should be considered a form of eugenics. He answers that “what was especially objectionable about this [20th-century eugenics] movement was the coercive imposition of a state vision for a healthy population.”
But a new eugenics would be different, he says: “Modern eugenics, from testing for diseases to deciding whether you want a girl or boy, is voluntary.”
Here is where Savulescu’s oscillation between two kinds of language – “choice” and “fancy” on one side, “obligation” and “duty” on the other – becomes especially perplexing, and more than a little problematic. He says that parents should have the choice to select against possible flaws, but also argues that when genetic selection (or genetic engineering) become more widely available, parents will have an obligation to use them to improve society.
How and when does an apparently optional “choice” become an “obligation?” I hate to get all Handmaid’s Tale here, but I cannot help wondering how such an obligation might be enforced. Intense social pressure? Insurance company requirements? Will prospective parents have to assess their reproductive plans to make sure their children will be “ethical” and able to contribute to society?
Given mainstream culture’s past and current attitudes toward a variety of differences and disabilities, it seems likely to me that Savulescu’s vision could lead us to incredibly dark places.
Posted by Mike Beitiks, Biopolitical Times guest contributor on August 17th, 2012
Due to several factors (mostly incredibly poor time management), I have developed a certain scholarly expertise in Internet viral videos over the course of my lifetime.
As such an expert, I can inform you that in the canon of viraldom, there's an entire class of cinéma-vérité videos that companies create to generate buzz for their products. These are staged videos intended to be taken as real, presumably in hopes that the verisimilitude will carry potential customers through the entire advertisement.
Knowing of this advertising technique, when I saw the Mentos-sponsored video promoting Singapore's "National Night," in which the mint company with the tagline "The Freshmaker" encourages Singaporeans to make some fresh babies, I knew such trickery was afoot.
The commercial is a three-minute rap song that combines the Singaporean government's rigid pro-procreation policies with a caliber of pickup lines usually reserved for bachelor party dares. Up until the mid-1980s, Singapore’s eugenic policies entailed actively promoting reproduction only among the nation’s most educated, and providing financial incentives for poor, uneducated parents to undergo sterilization. Singapore has switched gears in recent years and begun to prioritize population growth in any form rather than from only one sector, but a eugenic undertone still remains in policies specifically targeting certain classes.
Mentos’ idea was clearly to make the video shocking enough to be entertaining, but real enough to be confusing. It presents itself as an accompaniment to Singapore’s National Day on August 9, the parade-and-firework celebration of the country’s independence from Malaysia in 1965. It can be assumed that Mentos wanted viewers to question whether Singapore's government was behind the commercial.
Spoiler Alert: The video was not funded by the Singaporean government (if you enter the URL provided in the video, you're taken to Mentos' Facebook page). However, the city-state has been involved in the ad campaign's success. Slate notes that the government's notoriously itchy censorship fingers have uncharacteristically allowed the video to air on TV in the country.
The song lampoons the Singaporean government's notoriously eugenic reproductive policies by over-embracing them. While generally crass, it is legitimately clever at points, subtly skewering the irony in the country's "Merlion" hybrid-animal mascot, vaporizing romance by rhyming "patriotic wife" with "manufacture a life," and likening intercourse to the ever-so-sexy work of a government scholar.
The problem is, where the song is intended as a send-up of Singapore's desperation to raise its birthrate while keeping its bloodlines pure, it falls short. General rule of thumb: If your satire doesn't make its subject at least a little angry, it's not good work. The Singaporean government's complicity demonstrates that the laughs Mentos has popped out are in line with government policy. The song references "National Duty," in several forms suggesting that the ultimate intention of the sex act is to "make a little human that looks like you and me," and explicitly narrows its message's intended audience to "financially secure adults in stable, long-term committed relationships."
In an attempt to be controversial while still pleasing the censors, Mentos has not made a clever viral video as much as it's provided the kind of entertainment to which court jesters used to aspire. The jester is as cheeky as he wants to be while entertaining dinner guests, but when it's all over, he's bowing to the king.
Posted by Center for Genetics and Society on August 15th, 2012
North Carolina historical marker
A free public event was held at the Berkeley Law School on the UC Berkeley campus (105 Boalt Hall) on Tuesday, August 28, 2012 from 12:30 to 2 pm.
For much of the 20th century, California was at the forefront of eugenic ideology and practices in the United States, and holds the dubious distinction of being the state with the highest number of eugenic sterilizations performed under the authority of law – some 20,000 procedures between 1909 and the mid-1950s. Coerced sterilizations continued in public hospitals into the 1970s, and it has recently come to light that in very recent years, women prisoners in California have been sterilized without their consent or knowledge. Today, California is a leader in research and services related to human genomics and assisted reproductive technologies. Speakers at this public event will consider the long history of eugenics in California and explore continuities and discontinuities in the uses and misuses of genetic ideas and practices.
Dean Christopher Edley, Berkeley School of Law, will give opening remarks to welcome attendees.
Eugenic Sterilization in California: Stories and Statistics
Miroslava Chávez-García, University of California at Davis and Alexandra Minna Stern, University of Michigan
We provide an overview of the patterns of the 20,000 eugenic sterilizations performed in California state institutions from 1909 to 1979, with close attention to race, gender, class, and diagnosis. We will also highlight stories of sterilization victims and the ways in which they attempted to challenge the state's authority to control and contain their reproductive rights. As we will demonstrate, the process had a devastating impact on the victims.
¿Más Bebés? (documentary film)
Renee Tajima-Peña, University of California at Santa Cruz; Virginia Espino, University of California at Santa Cruz, and Kate Trumbull, documentary filmmaker
The feature-length documentary ¿Más Bebés? (working title) investigates the history of Mexican American women who allege they were coercively sterilized at Los Angeles County-USC Medical Center during the 1960s and 70s. Many spoke no English, and testified that they were prodded into tubal ligations during active labor. The sterilizations triggered the 1978 class action lawsuit, Madrigal v. Quilligan, and a protest campaign that galvanized the Chicana feminist movement.
Eugenics in California Women’s Prisons Today
Kimberly Jeffrey and Courtney Hooks, Justice Now
Since 2003, Justice Now has been working collaboratively with people in California’s women’s prisons to document how prisons violate the international right to family and function as a tool of reproductive oppression. Presenters will place a spotlight on personal experience with as well as the systemic pattern of destruction of reproductive capacity of women of color and gender variant people in California women’s prisons through several state-sanctioned policies, including forced and coerced sterilizations (e.g. the illegal and routine sterilization of hundreds of people in prison during labor and delivery), and other violations of safe motherhood and reproductive justice.
Should We Worry About a New Eugenics?
Marcy Darnovsky, Center for Genetics and Society
Today's fast-developing genetic and reproductive technologies offer significant benefits, but can also be misused in ways that exacerbate existing inequalities and create entirely new forms of injustice. California, a hotbed of eugenic advocacy in the last century, is today a center of biotechnology research and commercial development and the assisted reproduction sector, as well as home to some troubling techno-enthusiastic ideologies. Our efforts to confront California's eugenic history can help prevent these dynamics from veering toward a new eugenics.
CONTACTS: Susan Schweik, UC Berkeley, firstname.lastname@example.org, Marcy Darnovsky, Center for Genetics and Society, email@example.com
In Virginia and dozens of other states, mental illness, physical disability, criminal behavior, alcoholism, sexual promiscuity, and being an interracial couple were all considered sufficient reasons to take away the ability of men and women to have children. Virginia’s eugenic sterilization law remained active until 1979; by then, over 8,000 people had been forcibly sterilized.
Virginia has made some strides forward in addressing its history, issuing an official apology in 2002. But as in the rest of the country, victims of involuntary sterilization have not seen a dime in reparations, and students rarely see a word about American eugenics in their textbooks.
When the story of eugenics and the fascination with purifying the human race is mentioned, it is told as a history located in and limited to Nazi Germany. But 32 US states had active eugenic sterilization laws for much of the twentieth century, and most have done little to address this injustice.
An effort in North Carolina to offer reparations to living victims of eugenic sterilization looked poised to succeed earlier this year, but was turned down by a cash-strapped Senate. It’s doubtful that Virginia will offer any actual compensation to its living victims, but Hope has asked for “a symbolic payment” from the General Assembly and Governor Bob McDonnell. While hopefully not the end of the state’s efforts, the gesture marks increasing interest by state officials and others in formally addressing this ugly American story.
In 1877, Richard L. Dugdale published a book called The Jukes: A Study of Crime, Pauperism, Disease and Heredity. He built on the work of his mentor, Elisha Harris, and in turn was cited by Francis Galton, in the 1883 book in which he coined the term eugenics.
Dugdale was a reformist, whose description of this degenerate clan pointed to their terrible environment as well as their familial relationship. But the story of the Jukes soon became a morality tale, often linked to Biblical verses (such as Exodus 20:5, Isaiah 65:7, and Jeremiah 16:11) about visiting the sins of the parents on future generations. The story was updated as The Jukes in 1915 by the eugenicist Arthur Estabrook, and became a staple of sermons around the country, often contrasted with the legend of the 18th-century theologian Jonathan Edwards. It influenced the promotion of involuntary state-sponsored sterilization in the U.S. and specifically the Supreme Court decision in Buck vs Bell, which legalized the practice.
Paul Lombardo recently published a masterful summary of this tale in the Journal of Legal Medicine. That's behind a paywall (abstract) but the essence is covered in a USA Todayarticle by Dan Vergano:
"The story is incredibly hateful and lacking in compassion and false," says legal historian Paul Lombardo of Georgia State University in Atlanta. "The story of the Jukes is demonstrably false, and yet people keep repeating it, sometimes knowing it's false."
The standard narrative was debunked by Clarence Darrow in 1925, by Jacob Landman in 1932, and by others. For a start, the pseudonymous Jukes came from 42 families, not all connected. Said Darrow (quoted by Lombardo):
It is the story of the squalid section of every isolated, sterile, rural community and of every poverty-stricken city district.
But the myth of the Jukes would not disappear. In 1960 it remained so well known that the historian Theodore White could use it as shorthand for squalid corruption, and assume that his readers would know what he meant. And in 2000, the televangelist Marilyn Hickey helped to revive it again, and it's become a staple of many Christian websites, as Lombardo details. And this matters a lot, he explains:
Those who parrot the arguments of generational guilt and hereditary taint may be ignorant of their beginnings in eugenic mythologies formulated over a century ago and how they were used to support political campaigns that included the eugenic sterilization movement. But it is still true that contempt for the poor, the diseased, and the powerless remains a part of our current political landscape. And those who revive the parable of the Jukes today sound a clear echo of that most toxic strain of eugenic propaganda.
Lombardo has done us all a service by reminding us of this history. How important a service can be seen in the simplest and least argumentative comment on Vergano's USA Today piece:
Thanks for the article! I was totally unaware of any such laws. It's kind of frightening.
Michael Johnson, the legendary athlete, recently made global headlines for suggesting that black American and Caribbean sprinters have a "superior athletic gene." He noted that all eight sprinters in the 2008 men's Olympic final were descended from slaves, and speculated that this could have contributed to their speed.
Inevitably, the media took his comments a stage further. For example, Fox Sports titled its report, with quotes in the original, although there is no evidence that Johnson exactly said this:
"Slave gene made me run fast"
Johnson still holds the 400m world record, set in 1999, and the third-fastest time ever over 200m (he held both records simultaneously for a decade). Since retiring in 2000, he has proved himself as an extremely articulate commentator on the sport, a "solid gold sports pundit," working mostly for the BBC.
The genetic speculation came in a TV documentary he made for Britain's Channel 4, Michael Johnson: Survival of the Fastest, which included a DNA ancestry test (he's of West African descent, if the analysis is accurate). It was, according to the review in the London Independent, "a cautious film, properly concerned to acknowledge how important culture and personal qualities are in the development of athletic excellence." The Telegraph called it "an excellent — and thoroughly shaming — documentary." As well as genetic speculation, it included some significant introspection:
All my life I believed I became an athlete through my own determination, but it’s impossible to think that being descended from slaves hasn’t left an imprint through the generations.
As a media pro, Johnson should have known that nuance does not translate to tabloid journalism. Moreover, the appalling conditions the program described, for slaves in transit and after arrival in the U.S. and Caribbean, may have left psychological scars down the generations, not to mention the economic and political consequences — but that's not genetic.
If the program said, as reported, that the mortality rate on slave ships was "between 50 and 96 per cent," it was wrong. Some ships were disastrous, but overall the historical record suggests that mortality was about 13% — a number that bespeaks enormous suffering, but too little for a "bottleneck" genetic selection process. Moreover, the suggestion that the subsequent conditions of slavery had some kind of epigenetic effect that made people of West African descent faster is more than a little lacking in scientific evidence.
The intricate developmental relationships between genes and physical environment, not to mention social challenges and opportunities, make simplistic statements about genes not only untenable but worryingly counterproductive to broad-based social, physical and economic development. Johnson brands steroid users "cheats" and returned a relay gold medal when one of his teammates tested positive; he is a man of integrity. He should be proud of his own talent and hard work. He deserves that.
Protest against eugenic
sterilizations, circa 1971
Monetary compensation for North Carolinians who were forcibly sterilized by the state was denied last week by the state Senate. Victims and advocates have been struggling for recognition and compensation for nearly a decade, but despite support from Governor Bev Perdue and a bipartisan majority in the state’s House of Representatives, the Senate denied the $50,000 payments that had been proposed for the 146 living victims who have been verified. (Verification of another 200 is pending.)
Of the 32 US states with eugenic sterilization laws on their books during the twentieth century, North Carolina had one of the most extensive and long-lasting programs. Between 1933 and 1974, it sterilized about 7,600 people who were considered epileptic, “feeble-minded,” or too poor.
But North Carolina was also the first state to offer more than just an apology for these abuses. It set up the Justice for Sterilization Victims Foundation in 2010, and was on track to provide sizeable monetary compensation to those who came forward. The decision by the Senate represents not merely a lack of action, but a step backwards: the Foundation will be forced to close its doors by the end of the month.
There is no way to give back what is taken from those who are forcibly sterilized, or to put a price tag on the loss. Despite the deep disappointment of the decision in North Carolina, let’s hope that the systematic avoidance of America’s eugenic history is a route that is no longer viable.
The skit features a young white man and his pregnant wife, played by another white man. Their doctor asks if they would prefer a baby boy or girl, explaining that their fetus is at the stage at which hormone therapy can influence certain traits. The couple is surprised, but they immediately dive into it, opting for a son because “boys are funnier.” Next on the menu: eye color. After a flip of a coin, they settle on green.
Then the doctor, who is black, asks if they would prefer a white or black child. Their faces fall. They nervously venture that they want the baby to look like them; the doctor says, “So that’s how it’s gonna be, huh?” The parents-to-be become increasingly awkward as they try to avoid offending their doctor, who is also gay and an amputee – traits they are then asked to opt for or against. When they finally emerge from the office, their efforts to achieve political correctness have led to an unanticipated outcome. “We’re gonna have a gay, black, pirate baby,” the wife glumly declares.
The Whitest Kids segment is reminiscent of a scene in another pop culture must-see, the science fiction classic GATTACA, in which a white couple similarly consults with a black doctor about their future child’s traits. These expectant parents have already decided that they want a boy with hazel eyes, dark hair, and fair skin. The doctor raises his eyebrows as he mentions their skin color preference, but nods approvingly and notes the other traits he has taken the liberty to select against, including a propensity for violence or alcoholism. The couple tentatively suggests that perhaps they should leave some things to chance. But they are persuaded by the doctor’s forceful response that “there is enough imperfection in the world already” and that they should give their child “the best chance possible.”
Both of these fictional situations depict expectant parents being pushed into the role of consumers by developments cast as benefits of modern medicine. They seem uneasy as the baby waiting for them suddenly becomes the product of their preferences, but they choose nonetheless. They experience doubt and discomfort about deciding whether to follow or challenge culturally hegemonic assumptions that assign normative value to arbitrary phenotypic traits, but they make the decisions.
The result in Whitest Kids is the inverse of what’s likely if such choices become available; the scene from GATTACA is much more probable. The technical imperative to choose the traits of one’s children would encourage many if not most people to eliminate difference in the name of avoiding “imperfections.”
This prospect is presented as comedic in the first and as science fiction in the second. But what if the option to pre-select the traits of future children were to become a real possibility? As selection technologies become ever more powerful, it will be increasingly important to move beyond the discomfort of the genetic counseling session, to think collectively about whether we really want the power to design our children.
Last week, I flew cross-country to a symposium on synthetic biology organized by the National Academy of Sciences. While much of the symposium was as I expected, I was appalled that a growing number of synthetic biologists seem to support re-engineering future generations of human beings in fundamental and radical ways.
Using synthetic biology techniques to redesign the human germline came up a number of times, with little recognition of the serious ethical problems it would pose. For example, Peter Leadlay, a biologist at the University of Cambridge, remarked:
I’m really interested in nature, but I do not see any problem, and I’m struggling to understand why other people have a problem, with changing the genetic makeup of a human if it is done reflectively, thoughtfully, we have good reason to believe it might work, and it alleviates human suffering. So, I think that it is perfectly proper to do that, and it is just part of what we’ve been doing already for the same reasons.
Remarks like Leadlay’s wouldn’t be so disturbing if they were isolated incidents. But a number of leading synthetic biologists seem to share his view that modifying fundamental aspects of human biology in irreversible ways is “perfectly proper.” Here’s a list of similar statements:
• Drew Endy: “What if we could liberate ourselves from the tyranny of evolution by being able to design our own offspring?” • Craig Venter: “Not too many things excite my imagination as trying to design organisms – even people – for long term space flight, and perhaps colonization of other worlds.” • George Church: “I wouldn't mind being virus-free,” he says with equal parts mirth and earnestness. It may be too late to reengineer all of his own cells to prevent viral infections, but Church doesn't rule out the possibility of rewiring the genome of a human embryo to be virus-proof. • Andrew Hessel: “[P]erhaps it's time to consider a new grand challenge for genetics, one that captures the public interest. I can think of none grander than an international effort to write a human genome. I want to be absolutely clear that I'm talking only about the task of writing a complete 3 billion basepair human genome, correctly organized into 23 chromosomes, and packaged into a nucleus. A technical challenge, validated by showing the synthetic genome is functional if microinjected into a cultured cell. What I'm definitely not suggesting is growing a baby from a synthetic genome. Before we can fly, we need to be able to walk” • JohnJoe McFadden: “But why stop with microbes? It will soon be possible to make entirely novel forms of plants or animals (including man).”
Surely not all synthetic biology researchers share these techno-eugenic dreams. An article by one critic, New York Medical College Professor of Cell Biology and Anatomy Stuart Newman, can be found here. But with only a few exceptions, the eugenic fantasies of leading synthetic biologists have been met so far by a disturbing silence in the scientific community. Here’s hoping that more of their colleagues will speak up to challenge them.
Ross Douthat, the young conservative who replaced Bill Kristol at TheNew York Times in 2009, used his latest column to address the issue of "Eugenics, Past and Future." He made some valuable points, but unfortunately, he was selective in his history, took a gratuitous sideswipe at "liberals" and proceeded to distort the discussion to reinforce his own prejudices.
The top and tail of the column are sensible. Eugenics really was a common belief among the American elite before World War II, and "a story that defies easy stereotypes about progress and enlightenment." Moreover, his conclusion about what modern elites have in common with their grandparents is accurate enough:
First, a relentless desire for mastery and control, not only over our own lives but over the very marrow and sinew of generations yet unborn. And second, a belief in our own fundamental goodness, no matter to what ends our mastery is turned.
Between these two paragraphs, however, Douthat characterizes the older eugenicists as being "often political and social liberals," which is not totally untrue but definitely misleading. The first instigator was a British aristocrat who proposed breeding "men of distinction and women of wealth" to create a gifted race, and proposed replacing blacks in Africa with the supposedly more-capable Chinese. Later enthusiasts included President Hoover, J.P. Morgan, Charles Lindbergh and many other right-wing leaders, some of whom applauded German efforts at racial purification.
Douthat ignores the obviously racist tenor of eugenic thought and asks rhetorically if modern prenatal testing is a sort of "liberal eugenics" (with quotes in his original). Again, this is a distortion, although there are indeed some self-identified liberals with sympathy for free-market eugenics. However, the tendency is more accurately associated with the now old-fashioned sense of "liberal" meaning "libertarian."
Where he goes completely off the rails, however, is his assertion that
Like so many of our debates about reproductive ethics, that question hinges on what one thinks about the moral status of the fetus.
Douthat uses that to invent his own particular straw-person argument about what he sees as a "rigorous pro-choice perspective." For him, there can be no nuance for the opponents of his own hard line. In that, of course, he is quite wrong.
With only slightly more subtlety than most anti-choice advocates, Douthat is pushing a line that uses widely shared concerns about prenatal selection practices to justify restricting or banning abortion. We saw this recently with PRENDA, the so-called Prenatal Nondiscrimination Act, which tries to use sex-selection as a wedge issue to divide progressives and undermine abortion rights. We have seen it in numerous other proposals. But these are excuses, as several recent articles published by RH Reality Check have documented, and as many civil rights groups have stressed.
To Douthat, the horrific abuses done in the name of eugenics should be addressed by elevating the status of embryos, restricting the rights of women, and blaming liberals. We would be better advised to address the eugenic impulse directly, and to confront the sometimes unacknowledged racism, sexism, homophobia and elitism that still haunt our society.
How and why do long-discredited biological explanations of socially-defined race maintain a presence within scientific and medical research? How do misguided research practices and policies lay foundations for technologies, discourses and public understandings that foster biological assumptions about race? Esteemed scholars of genetic technologies and racial justice explore these and many other questions in a new short video by the Center for Genetics and Society, "Race Under the Microscope," featuring Dorothy Roberts, Joseph Graves, Jonathan Kahn, and Osagie Obasogie. We hope that this piece will serve as an educational resource in the larger efforts to reform the dangerous and sloppy ways in which race is being rewritten at the molecular level.
The shocking details are best driven home by the chilling personal narratives of Uzbek women. Many are sterilized without their knowledge during childbirth, and only find out later when they are unable to conceive:
Two weeks after Bakhor came home with her newborn son the joy of the new baby was overshadowed by a growing suspicion that something had gone badly wrong.
"I kept bleeding heavy black lumps, and the pain was unbearable, I thought I had a tumour," the 32-year-old Uzbek says.
It took Bakhor four months to save up money for an ultrasound. She cries as she remembers the result. During the caesarean section, the doctor explained, she had a hysterectomy.
"The doctor said 'you don't have a uterus any more'. He said: 'What do you need it for? Two children is enough for you'," she says.
"On paper, sterilizations should be voluntary, but women don't really get a choice…It's very easy to manipulate a woman, especially if she is poor. You can say that her health will suffer if she has more children. You can tell her that sterilization is best for her. Or you can just do the operation."
"Every year we are presented with a plan. Every doctor is told how many women we are expected to give contraception to; how many women are to be sterilized…There is a quota. My quota is four women a month.
Other quotas are reportedly as high as eight women per week, and doctors may face fines for disobeying.
The chilling news from Uzbekistan is a disturbing highlight in a month of tumultuous news about coercive sterilization. In the UK, the Guardian recently reported that “tens of millions pounds of UK aid money have been spent on a programme that has forcibly sterilised Indian women and men.” In China, human rights activist Chen Guangchen, who angered authorities by exposing state-sponsored forced abortions and sterilizations, escaped from house arrest and reportedly sought refuge in the US Embassy in Beijing, sparking controversy in China and abroad.
On a more positive note, North Carolina last week took a significant step by writing $10.3 million for victims of its former eugenic sterilization campaign into the state budget (which is still pending review). With only a few of the 32 US states that had at one time had eugenic sterilization laws on their books having even apologized for the violations, our own eugenic past lingers to this day.
Fortunately, there has been some vigorous pushback.
Michael Cook at BioEdge has done excellent work following these issues, especially the infanticide question, in a series of posts (1, 2, 3, 4). He also highlighted the racism pill and the proposal to engineer humans to mitigate the effects of climate change. (Disclosure: on other issues, he has acknowledgedBiopolitical Times.) Cook, as usual, remains relatively polite — firm but courteous — in his criticisms. Others are less restrained, but often thought-provoking; see for instance Amanda Pustilnik on racism as a cultural issue.
In particular, Ari Schulman has analyzed, shredded and ridiculed the "moral acuity" of the "after-birth abortion" paper in a tremendous post at The New Atlantis. It's hard to excerpt, since many of the best parts are his reactions to direct quotations from the original paper. Considering the authors’ suggestion that newborns with Down syndrome might place “an unbearable burden on the family and on society as a whole, when the state economically provides for their care,” he asks:
Can you think of any cases before where groups of individuals have been denied rights or killed on the basis that they are not full persons, are disabled, and/or that they are a burden to society?
As he says, the paper is full of "senselessness and sophistry masquerading as rational inquiry." But Schulman goes a step further, and considers the authors' defense against criticisms of their paper, which was essentially that they are simple philosophers, unused to the ways of the world. Specifically:
When we decided to write this article about after-birth abortion we had no idea that our paper would raise such a heated debate.... It was meant to be a pure exercise of logic: if X, then Y.... We do not think anyone should be abused for writing an academic paper on a controversial topic.
Oh, right, says Schulman:
It’s all just about logic and academic freedom and the boldness to ask challenging questions! Why are people getting so bent out of shape!
Just to put peoples’ silly reactions to this paper in context, imagine that instead of the paper making the case for infanticide, it advanced an I’m-just-saying or gee-hey-why-not daring defense of some other practice, like, say ... rape, murder, slavery, or genocide. Actually, I guess I’m tilting the question by using such condemnatory terminology. “Genocide,” for example, should just be called “heritage-selective aggregate after-after-birth abortion,” lest we acknowledge “the best interests of the ones who die.” Anyway, who would dare fail to celebrate such a harmless intellectual exercise?
Who indeed? After all, when Herman Kahn was "thinking the unthinkable" about nuclear warfare, that surely had no effect on nuclear weapons policy in the 1950s and 60s. The continual drumbeat about the technologies involved in cloning mammoths (or even Neandertals) is certainly not intended to encourage such activities. When advocates of genetically re-engineered humans began to discuss how and when post-humans would be created, that was never meant to affect actual policy or the direction of science. No, these are mere academic speculations, with no real-world consequences at all.
The Oxford connection is no coincidence. That's also the base of two of the three authors of the paper about engineering humans as a response to climate change, and where the third used to work. The central figure in these connections is Julian Savulescu (another is the noted transhumanist Nick Bostrom). Savulescu got his inspiration from Peter Singer, who, as Michael Cook has noted, "has become world famous as a theoretician of animal rights and advocate of infanticide for disabled babies." Singer is admittedly often provocative in an interesting way — his "Escalator of Reason" is worth reading — but Savulescu's entrepreneurial approach to academia seems set to metastasize as the Uehiro Center he directs turns out more and more newly minted doctorates. And that could be very dangerous.
Kudos to those pushing back against spurious logic and simplistic utilitarianism. And to end on a somewhat hopeful note, it does seem that bioethics is starting to respond to criticism, with discussions like this one in the Journal of Medical Ethics on the real-world limitations of informed consent. That's a topic with many pitfalls surrounding it, but it's the kind of discussion academia needs to be having. Not ungrounded "thought experiments" about making humans smaller or murdering those who don't fit someone's stereotype.
That frightening techno-eugenic vision is now being “upgraded” for the digital generation. The ideological project of genetically “enhanced” post-humans appears to be reemerging – this time with a synthetic biology twist.
[I]t's time to consider a new grand challenge for genetics, one that captures the public interest. I can think of none grander than an international effort to write a human genome.
Let’s pause and reflect about what Hessel is proposing. Writing a human genome entails nothing less than designing a human being. This would of course be extremely problematic: technical implausibility aside, it’s an inherently eugenic undertaking, which necessarily involves selecting for genetically-encoded traits and deselecting for others. Read in this light, Hessel’s seemingly benign scientific provocation is far from innocent.
Hessel’s weapon of choice for designing a better human is synthetic biology. He hails his hypothetical effort to write a human genome as synthetic biology’s “proof of concept” par excellence, equating building a “better” human with a bizarre technical game:
A technical challenge, validated by showing the synthetic genome is functional if microinjected into a cultured cell.
While Hessel seems to acknowledge the controversial nature of his proposal, he suggests that the any problem it might pose is merely a technical obstacle to be overcome: "What I'm definitely not suggesting is growing a baby from a synthetic genome," he writes. "Before we can fly, we need to be able to walk."
Scratch the surface and Hessel’s point is clear: There is nothing wrong with designing humans; we simply have to work out the technical kinks (“learn to walk”) first.
Elsewhere, Hessel remarks that synthetic humans are not far off: “Synthetic biology advances could see engineered humans being booted up in a few decades.”
Hessel is not alone among synthetic biologists who are subtly or not so subtly retooling the old eugenic dream of genetic engineering.
In a New Yorker article, leading synthetic biologist Drew Endy suggested that it might soon be possible to “liberate ourselves from the tyranny of evolution by being able to design our own offspring.” Just down the road at Harvard, synthetic biology pioneer George Church stated that he “doesn't rule out the possibility of rewiring the genome of a human embryo to be virus-proof.”
While the essential social and moral problems remain the same, the challenges for progressives posed by synthetic biology may exceed those posed by older genetic engineering technologies for at least two reasons, one technical and the other cultural.
First, synthetic biology technologies, though still in their nascence, may become much more powerful tools than older genetic engineering techniques. At least in principle, synthetic biology provides scientists the ability not only to tweak the traits of a bacterium, but to make new ones and design whole genomes. This accelerates and magnifies the dangers already latent in genetic engineering.
Second, synthetic biology has been billed as “genetic engineering for the Facebook generation,” a cool, hip new science targeted towards digitally savvy youth. This new ideology pegs synthetic biology as sleek and edgy artistic “design,” an empowering “DIY movement,” the newest internet fad. Synthetic engineering, writes Hessel, can “all be done with computer software” from “any old coffee shop.” This depoliticizing narrative is a clever way of deflecting the serious ethical and political questions that need to be asked about this extremely dangerous field.
While the prospect of writing the human genome strikes Hessel as all but inevitable – “Eventually, someone has to,” he writes – the future of synthetic biology is in fact still up for grabs. In recent months, synthetic biology has met growing dissent and rising worries from progressive organizations and policy think-tanks alike. Rather than writing the genomes of our children, it’s time for progressives to write an alternative, non-eugenic future and make the case against designer babies and other misuses of powerful technologies that pose grave physical and social threats.
Following a decision in January by the Eugenics Compensation Task Force, North Carolina victims of sterilization are being encouraged to come forward and will hopefully receive $50,000 in compensation (pending approval of Governor Perdue’s budget, which has allotted money for this plan). Of course, no dollar amount can fully compensate what was lost for the 7,600 people who were sterilized between 1929 and 1974. However, North Carolina’s efforts are praiseworthy. So far, the NC Justice for Sterilization Victims Foundation has identified 111 victims and expects the number to further rise.
An editorial in the Winston Salem Journal points out:
If North Carolina compensates victims of its forced sterilization program, it will become a leader in a worldwide justice movement. And it would become the first American state to compensate. That milestone can't come soon enough for North Carolina's victims, who are hurting in body and soul. Some have died waiting for help.
If, as I hope will be the case, other states will follow North Carolina’s lead, what state will be next to follow suit? Recent coverage by CNN’s Elizabeth Cohen and Anderson Cooper suggests that people are looking to California.
More sterilizations occurred in California than any other state, claiming some 20,000 victims. In 2003, California governor Gray Davis offered a three-sentence apology, but as the Los Angeles Times noted after the event:
No survivors or disability groups were on hand to accept it. There was no order to probe for more details of a history that, according to scholars, is still largely unexplored and not fully understood.
As such a large contributor to the American eugenics movement, California should be the next in line to step up, but it should not stop there. Of the 33 U.S. states that had eugenic sterilization laws, only seven have even issued apologies.
Setting up a commission similar to North Carolina’s could be deeply significant for the victims. Drawing attention to this dark history could also serve as a warning against the prospect of misusing 21st-century genetic and reproductive technologies. As Biopolitical Times readers well know, it haunts our thinking about the reproduction of people with disabilities and people of color today.
In 1940, when many feared that Britain would imminently fall to Hitler, a committee at Yale University extended an offer of refuge in the US to the children of faculty members at Oxford and Cambridge. Officials at Cambridge University declined, on the grounds that sending their children to safety when other Britons could not “might be interpreted as privilege for a special class.” But Oxford accepted the invitation, and in July of that year, 125 children and 25 of their mothers set sail for temporary homes with Yale families.
Their hosts in and around New Haven apparently acted out of altruism and kindness. Neither they nor the Oxford children and mothers were told that the Yale organizers were motivated by explicitly eugenic commitments to “saving at least some of the children of intellectuals.”
A fictional story based on this eugenics-inspired program is told in Pantheon, a thriller recently released in the UK (available in the US via online sellers). Author Sam Bourne, the literary pseudonym of prize-winning and left-leaning British journalist Jonathan Freedland, has written four previous thrillers, one of them a New York Times and number one UK bestseller. Pantheon has been reviewed in the UK by The Guardian,The Independent, and the Jewish Chronicle. The Daily Mail responded to its publication with an article about the Yale-Oxford program titled, “Did Yale University plan to create an intellectually superior race of children to repopulate Britain after World War Two?”
Freedland himself, in a Guardian piece written under his own name and in an interview sponsored by Jewish Book Week [UK], contemplates the early responses to Pantheon, and especially to his point that eugenics appealed strongly to elements of the political left as well as the right. Eugenics, Freedland writes, is “one of the grisliest skeletons in the cupboard of the British intellectual elite, a skeleton that rattles especially loudly inside the closet of the left.”
It’s all too easy, he notes, for left-liberals today to react as if this “were all an accident of time, a slip-up by creatures of their era who should not be judged by today's standards.” He continues:
[T]his was no accident. The Fabians, Sidney and Beatrice Webb and their ilk were not attracted to eugenics because they briefly forgot their leftwing principles. The harder truth is that they were drawn to eugenics for what were then good, leftwing reasons.
They believed in science and progress, and nothing was more cutting edge and modern than social Darwinism. Man now had the ability to intervene in his own evolution. Instead of natural selection and the law of the jungle, there would be planned selection….If the state was going to plan the production of motor cars in the national interest, why should it not do the same for the production of babies?
The UK reviews of Pantheon have been mixed. The Guardian, for example, called ita “pacy thriller” and predicted that “readers will not be disappointed,” but also criticized the book for being weak on character development and subtlety. According to the reviewer, Freedland is “unwilling to trust his readers with the complexities of history." And when it comes to Freedland’s treatment of eugenics, he wrote, “we get crude stereotypes.”
Well, perhaps – or perhaps what we’d now like to dismiss as “crude stereotypes” seemed at one time like common sense. In any case, at least the issues are being discussed in the UK. So far, no major US media outlet has covered either Pantheon or the eugenic ideas that motivated the Yale-Oxford program.
Perhaps this silence can be explained by the book’s not having yet been released in the US. But the US eugenics movement, a powerful force for much of the pre-WWII twentieth century, is on the whole little discussed in this country. And as Freedland writes in an author’s note at the end of Pantheon, it was “in particular vogue at Yale.” One notable adherent was Yale president James Angell (1921-1937), whom eminent Yale historian Gaddis Smith describes as “a fanatic eugenicist.” Neither Angell’s Wikipedia page nor the Yale website mentions his eugenic beliefs.
I liked Pantheon better than did most of the British reviewers, both as a page-turner and as a dramatization of recent histories whose meanings we would do well to ponder. In addition to giving us a vivid account of the Yale-Oxford eugenic rescue operation, Freedland weaves in other episodes from the 1930s and 1940s, offering glimpses of the Spanish Civil War, the “America First” movement, the virulently anti-Semitic Right Club in London, and the early days of the “Ivy League nude posture photo scandal,” another project at elite US universities that was motivated by eugenic beliefs.
Freedland opens his essay in The Guardian, which he says was triggered in part by the early responses to Pantheon, by asking:
Does the past matter? When confronted by facts that are uncomfortable, but which relate to people long dead, should we put them aside and, to use a phrase very much of our time, move on?
I’m with Freedland on this one: While eugenics once appealed to people across the entire political spectrum, those of us associated with its progressive, left and liberal end have a special responsibility to understand what it meant then, and what its legacy is now.
Last weekend offered an interesting conversation on past and more modern attempts at building betters humans, which might ultimately say something interesting about our human future.
On Friday, the New York Times published an article on North Carolina’s deliberations on compensating victims of its eugenics program, in which nearly 8,000 people were sterilized without their consent between 1933 and 1977. This state-level program operated in the broader context of a global eugenics movement – reaching from Bloomington, Indiana, to Auschwitz – whose ultimate goal was to use science and medicine to breed better humans by weeding out individuals deemed unfit for reproducing their ostensibly inferior traits. The Times describes a number of harrowing accounts from North Carolina during this period:
There was a 14-year-old girl deemed low-performing and “oversexed” who came from a home with poor housekeeping standards. A man who raped his daughter at 12 signed her sterilization consent when she was 16 and pregnant. A mother of five was deemed to have a low I.Q.
Many of the victims mentioned in the Times article are still alive, including 62-year-old Charles Holt who was, in a sense, tricked into having a vasectomy as a young man. A social worker convinced his mother that this was the right thing to do since “it was a way of protecting Charles in case he were falsely accused of having fathered a child.”
Previous journalistic accounts – particularly the Winston-Salem Journal’s award-winning five-part series – have offered even more detailed descriptions of North Carolina’s chilling program and its horrific impact on people’s lives. But the New York Times has a reach and audience that may put this piece of history into mainstream consciousness.
These cases are particularly interesting in that they highlight how eugenics flourished in the United States after World War II, when eugenic ideologies were thought to have waned due to global exposure to the Holocaust’s horrors. The Times article discusses the entrenched nature of these programs by noting
about 70 percent of the North Carolina operations took place after 1945, and many of them were on poor young women and racial minorities. Nonwhite minorities made up about 40 percent of those sterilized, and girls and women about 85 percent.
Eugenics was driven by a desire to restrict reproduction to only those who were genetically gifted – a way to purify the human race for society’s betterment. But, the pursuit of human perfection is not only limited to screening or enhancement at the population level.
An example can be seen in ESPN’s broadcast of “The Marinovich Project” on Saturday evening. This one-hour documentary detailed the life of Todd Marinovich, a once heralded quarterback prospect who fell short of NFL glory. Among sports fans, the name “Marinovich” is synonymous with fanatical parenting; Todd’s father Marv is notorious for rigorously training him to be the perfect QB from birth. Marv notes in the film:
I started from birth and [went] through a series of stretching exercises. I would grab the foot and gradually bring it back and stretch the hamstring. Quads the same way. Todd was given a limited diet. He wasn’t supposed to have any processed foods. When Todd was teething, we gave him frozen livers and kidneys. We kept them out of walkers so that they could develop hand/eye coordination. We got him to become ambidextrous so he could throw with both hands. I took him out to the football field and had him crawl hundreds of yards....One exercise that Todd did required him to stand on a balance beam in a dark room and bounce a ball while doing multiplication tables out loud. . . . What I wanted to do was continuously raise the level of performance.
Marv notes in the film that he was quite clear about his motivations: “The question I asked myself: how well could a kid develop if you provide the perfect environment?” A 1988 article from Sports Illustrated – when Todd was in high school – offers a bit more detail on this training regimen:
What's fascinating about Marinovich, a 6'4½", 212-pound left-handed redhead, is that he is, in a real sense, America's first test-tube athlete. He has never eaten a Big Mac or an Oreo or a Ding Dong. When he went to birthday parties as a kid, he would take his own cake and ice cream to avoid sugar and refined white flour. He would eat homemade catsup, prepared with honey. He did consume beef but not the kind injected with hormones. He ate only unprocessed dairy products...
When Todd was one month old, Marv was already working on his son's physical conditioning. He stretched his hamstrings. Pushups were next. Marv invented a game in which Todd would try to lift a medicine ball onto a kitchen counter. Marv also put him on a balance beam. Both activities grew easier when Todd learned to walk. There was a football in Todd's crib from day one. "Not a real NFL ball," says Marv. "That would be sick; it was a stuffed ball."
Meanwhile, Todd's mother, Trudi, worked on the region above the neck by playing classical music (lots of Bach and Beethoven) and jazz (plenty of George Shearing and Woody Herman) in his room. Cartoons were forbidden because they were too violent. [Author's side note: Training your child from birth to play football – a sport that often leaves players with debilitating, lifelong injuries is appropriate, yet allowing him to view the animated antics of Wile E. Coyote and the Roadrunner is too much?]
Instead, Trudi tuned her son in to old movies like Hitchcock and Agatha Christie thrillers to spark his intellect. She dragged Todd along with his sister, Traci, now 21, to museums. To this day, when Trudi makes an unexpected turn in the car, Todd says, "Uh-oh, Mom's taking us to another museum."
Eventually Marv started gathering experts to work on every aspect of Todd's physical condition—speed, agility, strength, flexibility, quickness, body control, endurance, nutrition. He found one to improve Todd's peripheral vision. He enlisted a throwing coach and a motion coach and a psychologist. These days 13 different experts are donating their time in the name of science.
Todd became a quarterback phenom in high school, gaining national attention as the “Robo Quarterback” that ultimately landed him a football scholarship at USC. Todd’s professional career was cut short due to drug abuse – an ending not entirely unpredictable given the tremendous pressure he was put under to become what his father wanted him to be, not his own person.
One would be hard pressed to call the Marinovich’s training program a form of eugenics. However, there is an important connection in that it is the maniacal pursuit of molding individuals to excel in predetermined ways that ultimately drove eugenics at a policy level. This is the individual tragedy that’s often obscured by the population level indignities perpetrated by eugenics: even those designed to be perfect eventually suffer from the inhumanity of not being allowed to be their own person. Read together, the New York Times article and the ESPN film weave together a cautionary tale about both social and parental temptations to project a narrow view of perfection upon future generations.
The San Francisco Bay Area’s CBS affiliate recently ran a segment (video appears below) on the high demand and low supply of young Asian women willing to provide their eggs for other people’s fertility treatment. The clip focuses on the story of a young woman named Linh Hong, a tall, thin Berkeley grad with a 3.6 GPA – characteristics that, along with being Asian, yielded $15,000 for her eggs. Two couples are now expecting due to her services. The segment provides a decent overview of the issue, but is troublesome in at least two regards. First, it does not discuss the risks that egg providers face, which include ovarian hyper-stimulation syndrome that has led to serious adverse reactions and even death in some cases. Linda Yee, the journalist covering the story, only mentions the “grueling series of shots, doctors visits, and egg extraction surgery.”
A bit more detail here would have been useful, especially when astronomical compensation numbers upwards of $100,000 are thrown around in the segment at the very same time that many young women are feeling crushed by dramatic tuition hikes that have spawned campus protests across the state – including Berkeley, which is heavily targeted by egg brokers.
Second, the segment’s focus on Asian eggs makes it seem like these are the only racial traits that yield high compensation in the fertility market; historically, blond hair and blue eyes have been just as valuable if not more so. While the segment touches upon issues within Asian communities that may make this practice taboo (where scarcity drives demand upwards), a broader look at the traits sought by prospective parents would have provided greater context to a statement made by Stanford University bioethicist David Magnus in the segment: “What we have is the beginning of the specter of eugenics.”
News about non-invasive prenatal diagnosis (NIPD) was a high point in this summer's developments around the global problem of sex selection. A front-page article in the New York Times reported on a study that says a new prenatal genetic testing technique can detect fetal sex extremely early into a pregnancy with a high degree of accuracy – 95% at seven weeks and 99% at 20 weeks.
Quite remarkably, the new technique requires only a maternal blood sample. The test isolates and screens fragments of fetal DNA (known as cell-free fetal DNA or cffDNA) that begin circulating in the mother's blood soon after conception. A simple blood test is of course significantly less invasive than procedures like amniocentesis, which collect amniotic fluid and carry elevated risks of miscarriage.
While NYT and other outlets mention questionable accuracy, cost concerns, and the disappointed parents who've been duped by similar tests, coverage has barely nodded to NIPD's enormous implications. Concerns about how these tests will impact sex selection are written off as issues for countries like China and India, "where boys are prized over girls and fetuses found to be female have been aborted."
Others are telling a different story. In a recent interview with Al Jazeera English, my colleague at the Center for Genetics and Society Marcy Darnovsky noted:
Sex selection is taking place not just in countries in Asia, but it's spreading around the world. And, unfortunately, the United States has become a destination for people who want to escape policies in their own countries that restrict the use of some technologies for what is called 'social sex selection' – sex selection because that's what the parents prefer.
Dr. Sunita Puri has examined sex-selective practices among South Asian families living in the United States, as well as the divergent perspectives of American primary care physicians and sex selection providers about the procedure. Additionally, Mara Hvistendahl's recent book Unnatural Selection provides an unprecedented examination of the severe and globe-spanning consequences of sex selection. Hvistendahl estimates that 160 million girls have gone "missing" because of sex selection due to son preference, largely in China and South Asia. But sex selection also appears to be worsening in a number of regions around the world where development, modernization and access to affordable sex determination technologies are on the rise.
There are also other woefully under-examined questions, including what these seven-week tests might portend about selecting for or against traits other than sex. A test released just last month by biotech company Sequenom uses a similar non-invasive cffDNA early technique to test for Down syndrome. While many applaud "MaterniT21" for making screening for Down's more convenient, few are questioning what it means for parents to have such early knowledge about a fetus. My colleague Emily Beitiks touches on this in her blog this week in Biopolitical Times.
Prenatal genetic testing has been around for decades, as has the disability rights critique of it [1, 2]. But gaining access to genetic information about a fetus so much earlier would be a very significant change. At seven weeks, some women aren't even aware they're pregnant. Many have not yet told people, nor perhaps have they become as emotionally attached to the fetus as they will later on. At such an early stage, a woman can terminate a pregnancy simply by taking a pill. Undergoing a cheap, non-invasive and risk-free test, especially one likely to be sold as the "healthy" or "responsible" choice, might be seen as an inconsequential non-decision.
UC Hastings Law Professor Jaime King critically examines the social implications of NIPD if it becomes a widespread or even standardized part of prenatal care. She writes:
On a national scale, normalizing the offer of NIPD to all pregnant women can create significant pressure on women both to test their fetus and terminate affected fetuses, as the information is available via a risk free medium. This pressure can create a loop-back effect, such that the ease of testing and termination create disapproval for and reduction in support of women with disabled children, which, in turn, may increase the pressure to test.
As more genomic information becomes available at early stages of pregnancy, will parents select for non-medical traits like eye color, skin tone, height, or athletic ability? In such a scenario, one would decide which baby to keep based on whether or not it carries certain preferable and socially valued traits. How would this differ from past eugenic endeavors, which have led to nothing but catastrophe?
Public deliberation and attention from reproductive justice and other civil society advocates are sorely needed if we are to eschew NIPD's potential to exacerbate social discrimination and inequality, and to trivialize fraught questions around testing and sex and trait-selective abortion. And we have to do this while we ardently defend women's right to choose to terminate a pregnancy. The prospect of abusing technology and reproductive freedom to design future generations is a threat to both women's and children's rights and the common good.
Global attention to the growing sex selection problem appears to be snowballing. In the wake of last week’s draft resolution on sex selection from a special commission of the Council of Europe, the World Bank’s 2012 World Development Report (WDR 2012) [pdf], published Monday, foregrounds sex selection as a major global issue perpetuating gender inequality. Entitled “Gender Equality and Development,” the report identifies how complex social, behavioral, and technological factors have converged to skew sex ratios and disenfranchise women in parts of Asia and Europe.
The intersection between son preference, declining fertility, and new technologies has added to the number of girls missing at birth and may well disadvantage children already born through the number of siblings and the timing of births.
Although the report regards sex selection with seriousness and urgency, the overall statement is both proactive and optimistic.
Changes in informal institutions and, through them, household behavior are key to resolving this problem. And it can be done. Korea, where the male-to-female ratio at birth first increased sharply and then declined, suggests that broad normative changes across society brought about by industrialization and urbanization can ultimately return sex ratios at birth to normal ranges.
It identifies two levels on which policy efforts are desperately needed.
First, laws need to be enacted and enforced to deal with the abuse of sex selection technologies, as has been done in China and India. A second, and more promising, approach is to enhance household perceptions of the value of daughters. Expanding economic opportunities for young women, including those in the labor market …And the process can be complemented by providing financial incentives to parents to have daughters…and supporting media campaigns to change societal ideas about gender equality.
Efforts to attenuate the global sex selection problem will require coordinated top-down/ bottom-up approaches which, as above, acknowledge both the emergent technological and deeply rooted social/cultural dimensions.
The Council of Europe’s statements, released last week, astutely recognize how sex selection arises as an extension of culturally rooted violence and discrimination against women. Important research has shown these pervasive patterns violence are giving rise to sex selection not only in parts of Asia and Europe, but in North America as well. With this in mind, the commission’s recommendations espouse long term, socially informed, gender equality-based interventions.
Seeing sex selection featured prominently on the agendas of two major international bodies is encouraging to say the least. The hope is that WDR 2012 brings us one step closer to catalyzing action from the international community to address the sex selection problem, as well as the underlying gender violence and inequality issues that it both results from and promotes.
Dr. Otmar von Verschuer, an "internationally renowned expert on twin studies . . . [and also] the principal investigator in the experiments of Dr Joseph Mengele at Auschwitz." (http://www.
Researchers compare some behavior or trait in a set of pairs of monozygotic (identical) twins and a set of pairs of dizygotic (fraternal) twins. In theory, the siblings in each pair have been raised in the same way—i.e., they have "nurture" in common. But their "natures" might be different: Identical twins come from the same sperm and egg and are assumed to share their entire genomes; fraternal twins match up at only about half their genes. So if the pairs of monozygotic twins tend to share a trait more often than the pairs of dizygotic twins—be it the likelihood they will vote, a tendency toward altruism, or a strategy for managing their financial portfolios—the difference can be chalked up to genetics. Some call this approach beautiful in its simplicity, but critics say it's crude, potentially misleading, and based on an antiquated view of genetics. The implications of the studies are also just a little bit dangerous, because they suggest, for example, that some people just aren't cut out for being nice to one another.
Palmer correctly identifies Francis Galton as the first person to use twin studies as a methodology to seek the heritable components of human behavior. Galton also coined the term “eugenics,” giving twin studies an intellectual and political origin that few modern scientists care to acknowledge. While Galton’s initial approach to twin studies was surely rudimentary compared to today’s standards, Palmer draws attention to the assumptions embedded in modern twin studies that continue to raise questions about this approach:
Twin studies rest on two fundamental assumptions: 1) Monozygotic twins are genetically identical, and 2) the world treats monozygotic and dizygotic twins equivalently (the so-called "equal environments assumption"). The first is demonstrably and absolutely untrue, while the second has never been proven.
Palmer’s critique has (predictably) caused a firestorm in the article’s comments section. Regardless of which side you are on, Palmer ends the piece with a comparison of twin studies to phrenology that is worth thinking about:
There's a strong temptation to believe that the same genes that make identical twins look so similar also make them think and act identically. That assumption isn't just insulting to a twins' individuality; it displays a reductive attitude toward the incredible complexity of our genetic structure, which scientists are just beginning to understand.
Just in time for the “Summer of Sex Selection,” the Council for Responsible Genetics has published a thorough and timely report about the imminent introduction of “non-invasive prenatal genetic diagnosis” (NIPD) and how it may encourage the spread of reproductive trait selection.
Prenatal genetic diagnosis is currently accomplished with amniocentesis or chorionic villus sampling. Both of these methods hold a risk of miscarriage, preventing widespread use. NIPD, however, only requires a sample from the mother’s blood stream and can offer results as early as the seventh week of pregnancy, suggesting that prenatal screening will become far more pervasive. CRG’s report explores the risks of widespread NIPD use, whether screening for disabilities like Down syndrome, the sex of the fetus, or for a wider variety of traits and “pre-sick” tendencies.
The report explores the current limitations of NIPD and its predictive abilities, and then expands into tougher ethical questions. For example, author Lori Haymon asks how NIPD will raise new challenges for both pro-life and pro-choice groups, as NIPD may lead more women to abort after finding an “undesired” trait. Haymon challenges us to consider, “Will NIPD results provide a woman with information that she can use to make her decisions, or information that makes the decision for her?”
While the report does not attempt to provide policy recommendations for NIPD, it is significant for the questions it poses. These are questions we’ll have to confront to anticipate and avoid neo-eugenic uses of NIPD.
Between numerous newspaper and magazine articles, a report by the World Health Organization, and Mara Hvistendahl’s new book Unnatural Selection, it is safe to declare this the “Summer of Sex Selection” given widespread attention to the topic. This robust conversation is being driven by radically skewed sex ratios in some parts of the world that are wreaking demographic havoc. Son preference, along with increasing access to prenatal sex determination, has led to an estimated 160 million so-called “missing” girls – an astonishing figure that has led some localities to experience out of whack sex ratios that reportedly approach 200 boys born for every 100 girls.
I find it interesting that almost every conversation of this phenomenon in Western media outlets discusses son preference as some bizarre cultural practice that “those people do over there,” like bartering at a market. The ubiquitous yet subtly important phrase “in India and China” that highlights most of these accounts makes it seem like the devaluation of girls and women is uniquely Asian and South Asian – perhaps something that they’ll outgrow as they continue to buy Big Macs and Westernize.
Gallup has asked Americans about their preferences for a boy or a girl -- using slightly different question wordings over the years -- 10 times since 1941. In each instance, the results tilt toward a preference for a boy rather than a girl. The average male child-preference gap across these 10 surveys is 11 percentage points, making this year's results (a 12-point boy-preference gap) just about average. Gallup found the largest gap in 1947 and 2000 (15 points) and the smallest in a 1990 survey (4 points).
The attitudes of American men drive the overall preference for a boy; in the current poll, conducted June 9-12, men favor a boy over a girl by a 49% to 22% margin. American women do not have a proportionate preference for girls. Instead, women show essentially no preference either way: 31% say they would prefer a boy and 33% would prefer a girl.
It’s tempting to conclude that perhaps we’re not so different after all when it comes to the preferred sex of our children. But, it’s important to point out that a preference for sons may not be the same as son preference: it’s one thing to prefer a boy the way that one prefers chicken over steak and quite another to deliberately test for and abort girl fetuses. So while there may be conceptual similarities, this preference has not yet led American couples to pursue boys with the same vigor seen elsewhere.
But will new technologies change American sensibilities? Sex determination largely occurs via ultrasound at around 16 weeks, which is well into a pregnancy; only the most determined couples are likely to abort solely on the basis of sex at this stage. But new technologies such as non-invasive prenatal diagnosis, in which fetal sex can be detected as early as five weeks through a maternal blood test, may make sex determination and the possibility of terminating on the basis of sex easier – conceptually, emotionally, and physically. Might this technological shift turn Americans’ preference for sons into a full-blown son preference?
Charles uses this wheelchair later as "Professor X"
X-Men: First Class is the most recent addition to the X-Men series, which features humans born with mutant powers battling for their lives and respect while feared by the general population. Its release last week is sparking rich but in some cases misguided public conversations around genetics and human rights. One commentary focuses on its regrettable omission of civil rights events despite being set in the early 60s, while another makes dubious claims that it represents our “post-racial” society.
But no one appears to be questioning the whole premise of the X-Men series: Would people marked by their genetically-based physical and mental advantages actually experience group discrimination? The series depicts “gifted youngsters” who are oppressed because they are mutants; in real life young people with their “gifts” would be more likely to get dedicated websites and multimillion-dollar contracts.
X does several things well. Beyond its seamless computer graphics, tremendous acting, and cohesive storyline (it’s a prequel to the other films in the series) is a poignant portrayal of intolerance. Charles (future “Professor X”) and Eric (future “Magneto”), the leaders of mutant solidarity, are drawn together by their common goal of redressing hardships endured by their kind. But their allegiance is severed by divergent strategies: Charles intends to educate his oppressors, while Eric intends to overcome them (and obliterate one in particular).
This rift conjures heady questions of culpability, intentionality, and practicality. Must oppressors be punished, even when their offenses are motivated by ignorance rather than malice? Or do they deserve the opportunity to rectify their wrongs? Should the oppressed strive for peace and satisfaction by arduously cultivating equality, or by using brute force to demand respect?
The parallel between the Professor X/Magneto dichotomy and the one ascribed to MLK and Malcolm X is hard to miss. But as Ta-Nehisi Coates effectively argues in the New York Times, the new movie portrays “enlightened white dudes” confronting discrimination during major real-world events of recent US history. The filmmakers choose not to portray the concurrent movement for civil rights and racial justice. Is this an effective framework for social commentary?
This brings us back to the question of discrimination against the privileged. One clue: Unlike all non-mutant humans in the film (save one quirky scientist), we don’t hate these mutants; we want to be them. We leave the movie theater wishing we could teleport to the car while our children run ahead flapping their outstretched arms.
Ironically, the desire to achieve body/mind “greatness” underpins history’s most egregious human rights abuses (see X’s opening scenes). Conscious attempts to promote “X”-esque traits in society have led prominent scientists, Supreme Court justices, and even presidents to make ludicrous correlations between culture, race, social status, and value, sometimes expressed in laws and social practices of persecution, sterilization and torture. If human desires for faster/stronger/smarter can cascade to such nadirs of brutality, perhaps we should question our pursuits of enhancement.
As trait-selection genetic technologies develop, it would be wise to keep in mind who is likely to need protection from discrimination. X-type powers like flight or teleportation are unrealistic for the foreseeable future, as Emory bioethicist Paul Wolpe and others point out. Selecting for traits that emulate the current “best achievements of the species” is much more plausible. So the real X-persons would not be as fearfully different as characters like blue-skinned Raven (future “Mystique”). Far from persecution, the privileged “selected” would likely be primed as our greatest athletes, thinkers and leaders. That is, until selecting for these traits becomes the norm, and even higher standards are set for greatness (the Bell Curve is a fickle mistress). In this not-too-distant world of trait selection, what happens to those who choose not to adopt, or do not have access to, the technology?
“Whoah, slow down,” you might be saying. “No one said anything about human engineering. The movie is an allegory for the adversity and perseverance of historically marginalized groups. Besides, the effects were cool.”
But does it really serve this noble purpose? (Spoiler alert.) None of the mutants have less-abled bodies or minds; the only major black character is killed before critical narrative developments; and the mutants face persecution only because of their superhuman powers. In this movie, a group is forced into society’s margin for traits that keep people out of the margin in the real world. Neither present nor future human rights issues are well represented by this allegory.
The Annals of Human Genetics is a well-respected scholarly journal dedicated to “increase[ing the] understanding of the biology of human variation, both in disease and in health.” Since 1954, it has been known as a go-to place for cutting edge research on population genetics and other relevant scholarship regarding the relationship between human genetics and health outcomes.
Yet, the most recent issue of AHG takes a look back at the journal’s origins – a history that many geneticists would rather forget. The journal was originally conceived in 1925 under a different name: Annals of Eugenics. Between 1925 and 1954, the journal had an explicit mandate to publish scientific findings that furthered eugenic ideals related to breeding a superior race of Whites and curbing the reproduction of those deemed racially inferior – largely consisting of the poor, people of color, and those with disabilities. The editors noted in the inaugural October 1925 issue that “The time seems fully ripe for the issue of a journal which shall devote its pages wholly to the scientific treatment of racial problems in man.”
This special issue (free access) marks the first time that the articles published between 1925 and 1954 under the old title Annals of Eugenics are available online. USA Todaydescribed this as “represent[ing] a housecleaning for the publication . . . [in that AHG] has opened its archives.”
Well, not really. AHG’s past as the Annals of Eugenics wasn’t exactly a secret of Schwarzeneggar proportions. Folks have known and have been talking about this for quite some time. And while making these early articles freely available online will increase access, hardcopies of the Annals of Eugenics have been available in pretty much every major University library since their original publication.
This gesture by AHG’s editors is certainly important and will hopefully re-engage the scholarly community on the troublesome history between eugenics and certain applications of modern genetics. However, this is not so much of a housecleaning as it is an acknowledgment of something that many people working in this area already knew. That being said, AHG’s current editor hits the nail on the head in noting that the eugenic origins of modern genetic research “shouldn’t be forgotten. Since the social implications of a lot of current human genetics research are enormous it seems important that in judging what human genetics is doing now we maintain awareness of the history of this discipline."
Sometimes the phrase "gene of the week" just doesn't fit. We do have one this week — oh joy, a happiness gene! — but there are other, related reports equally worth noting. They are all about dreams of control, of ways we can take charge of our future by reading our biology and manipulating our children's genes.
First, and least, is the announcement of a commercial test to measure the length of telomeres and thus predict longevity! For a mere $700, a Spanish company called Life Length plans to sell you the "death test" with the claim that:
"Knowing whether our telomeres are a normal length or not for a given chronological age will give us an indication of our health status and of our physiological 'age' even before diseases appear."
However, a British expert tells Scientific American that: "We haven't defined what we consider to be a norm and what we consider to be abnormal, either long or short." Pro tip: Regular exercise, low stress and good diet are correlated with longer telomeres. Might be worth trying.
And the "happiness gene"? That's a typically unwarranted claim, derived from a journal article about how "functional polymorphism (5-HTTLPR) in the serotonin transporter gene is associated with subjective well-being." The abstract helpfully explains that this "may help explain the important genetic component of the individual baseline levels of happiness." Ian Sample of the Guardian notes in his fourth paragraph that the study marked a "tentative step" but finds this lead irresistible:
In work that gives cranky teenagers another reason to blame their parents for all life's woes, researchers have uncovered a genetic link to happiness.
And then he suggests that a "greater understanding of happiness genes might in future allow would-be parents to create a child who will be more satisfied with their life." And, sure enough, he found an academic, Edward Diener of the University of Illinois, to say:
"Parents one day might have the choice of whether to choose genes that will create a child who is more satisfied with his or her life."
And so the dreams of controlling the future surface again. Meanwhile, Discover (something of a haven now for transhumanists) has picked up on University of Oregon physics professor Steve Hsu's hopes of defining the genetic nature of "the g factor, or IQ." He wants to use that to, yes, select the embryos with the best combination of alleles, in order to increase the mean level of g by 0.2 SDs [from this pdf], so there will be "more than twice as many individuals exceeding 4 SDs above the parental mean." This will obviously solve the world's problems overnight, or something, it's not quite clear what. But Ronald Fisher, the great statistician and geneticist, and the long-time editor of the Annals of Eugenics, thought it was a good idea in 1911. Hsu's presentation ends by quoting Fisher.
In addition to being a professor of physics, Hsu is also associated with BGI, formerly the Beijing Genomics Institute. That's a very big deal: $1.6 billion in funding; ramping up to 1000 genomes (of many species) sequenced a day at $5K each; and, according to Hsu, "more sequencing power than all of US or Europe combined."
Is it unfair to lump what could develop into a major project funded by the Chinese government together with a crass commercial outfit and a tired rehash of genetic determinism? Yes it is. If Hsu's project really starts to take shape, then it deserves the kind of treatment Stephen Jay Gould gave The Bell Curve, and more. Until then, mild ridicule is a start. But we'd better keep an eye on this.
Two substantial excerpts of a conversation between Robert P. George and Arthur Caplan have been posted at Public Discourse. The discussion took place in December 2010, and was intended to cover "the current state of bioethics in America," with Caplan presenting the liberal point of view and George the conservative. The selections are presented as if to maximize controversy, but the agreement between the two is more striking.
The first is published as "Stem Cells: The Scientists Knew They Were Lying?" (which did attract some attention). Caplan does indeed excoriate stem cell researchers and their supporters who badly over-hyped ESC research, which he supports; George, who opposes it, notes that allies of his made false claims that "everything that could be done with embryonic stem cells could be done with adult stem cells" — which he and they knew to be false. Although Caplan and George disagree on embryo research and other issues, they do both accept that moral norms are vital to bioethics and that reductionist scientism is to be condemned.
The second excerpt is titled "Democratic Bioethics and Eugenics" and worth reading for a nuanced discussion which demonstrates that their areas of agreement are substantially larger than their conflicts. Again, it is possible to extract quotes ("the problem with eugenics is eugenics itself" ... "many say you can't [distinguish between enhancement and therapy], but I think you can at the extremes") but they really should be read in context.
More conversations like this please.
Update: Caplan was apparently surprised that his remarks about over-hyped ESC research were considered by some to be new, and taken out of context. He elaborates in Science Progress about the hype on all sides of that debate.
Last week Arizona became the first U.S. state to ban abortions that are motivated by the race of a fetus, and one of a handful of states that ban sex-selective abortions. Governor Jan Brewer, a Republican with a record of strong opposition to abortion rights, put her signature on the new law that will require doctors to sign affidavits stating that the reason for an abortion was not related to fetal race or sex. Doctors can be sued, stripped of their medical licenses, charged with felonies, and sentenced to prison terms for violations (1, 2, 3).
The Arizona law is part of a much larger strategy that opponents of abortion rights openly promote as a “new front in the abortion wars.” In 2008, Republican Congressmen Trent Franks of Arizona and Jeff Fortenberry of Nebraska first introduced the cynically named “Susan B. Anthony Prenatal Nondiscrimination Act,” which prohibits “discrimination against the unborn on the basis of sex or race.” Similar bills have been introduced in other states including Georgia, Mississippi, and New Jersey.
Beyond the obvious, what’s the thinking behind this? Anti-abortion rights leader Steven W. Mosher of the Population Institute argues that “[l]ike the ban on Partial Birth Abortion,” linking abortion to racial and sex discrimination will both chip away at abortion rights and “stimulate public debate on grounds favorable to the pro-life cause.” Translated by abortion rights supporter Kathryn Joyce, this means that “linking abortion with female infanticide and sex-selective abortion…[is] a method of converting moderates who would recoil at the thought of reproductive choice being used as a weapon of gender inequality.”
The same logic underlies the meaning-free notion of “race-selective abortion.” Anti-abortion rights advocates see this as a way to drive a wedge between Americans’ commitments to racial justice and their support for abortion rights. And as SisterSong’s Loretta Ross points out, it’s also a handy way to “shame-and-blame black women who choose abortion.”
Like many other conservative causes, the “new front” against abortion rights is well funded and multi-faceted. One tactic is the 2009 “shockumentary” Maafa 21: Black Genocide in 21st Century America, which argues that abortion is an attempted genocide of black people. The film has become a cause célèbre of the black anti-abortion movement, which supports the efforts to ban sex-selective and “race-selective” abortions. Reproductive justice legal scholar Dorothy Roberts points to the sad ironies that burgeoning movement represents:
They are essentially blaming black women for their reproductive decisions and then the solution is to restrict and regulate black women’s decisions about their bodies….Ironically, they have that in common with eugenicists.
Another tactic in the “new front” is the placement of dozens of billboards in cities including Atlanta, New York and Chicago that read “Black children are an endangered species” or “The most dangerous place for an African American is in the womb.” In the words of writer, blogger and reproductive justice activist Miriam Zoila Pérez, the billboard campaign “is exploiting America’s racist medical history to foster the belief that abortion is black genocide.”
Advocates of reproductive and racial justice and of reproductive rights have, of course, forcefully criticized the billboard campaign and legislative efforts to ban abortion for reasons of race or sex. Some of the billboards have been taken down following protest, and bills in states other than Arizona and at the federal level have so far stalled.
Here are a few resources for background, insight, and calls to action:
What might the world look like if traits like eye color, athletic ability, and skin tone could be pre-programmed for a price, and characteristics like homosexuality were eliminated through government-enforced inoculation?
Director Nisha Ganatra explores these questions in her provocative new 20-minute film Beholder, which was recently released online and at film festivals. It inaugurates the second season of FutureStates, a Corporation for Public Broadcasting / Independent Television Service project in which ten established and up-and-coming filmmakers explore current social issues by playing them out decades in the future.
Beholder presents a chilling scenario in which hetero-normative prejudices are realized through state-mandated applications of genetic and reproductive technologies. In an interview with Biopolitical Times, Ganatra said she wants to challenge viewers to imagine a future in which "difference is not only undervalued, but has been voted out completely."
Beholder protagonist Sasha lives in an ultra-conservative ultra-exclusive gated community called Red Estates, where streets are immaculate, crime is non-existent, and children are genetically enhanced. Scientists have also pinpointed a genetic marker for homosexuality, which has been outlawed by way of mandatory screening and inoculations during pregnancy (or, it is implied, forced abortions).
When Sasha finds out that the baby she is expecting carries the "gay gene," her doctor assures her that the problem can be quickly and easily resolved, and a nurse entreats her in a sterile and eerily polite tone to "please sign the consent form for the mandatory inoculation." Tortured by the thought of altering her baby, Sasha poses the question, "what if my child would have a better life being who he is?"
Under the looming threat of the "Genetic Protection Agency," Sasha knows that a decision to refuse the inoculation would mean fleeing Red Estates for "the Coasts," a place - according to Red Estates propaganda - that is rife with violence, poverty, and other social ills. In a campaign speech, Sasha's politician husband explains:
Recent studies find that genetically enhanced children, lead happier, easier, more normal lives than the coast children. Don't let your child be left behind!... Red Estates is a model city-genetically, morally, politically superior to everything beyond those borders. There are rules that make Red Estates great, and we have to live by those rules. For the greater good…No matter what the personal sacrifices.
Ganatra shrewdly shows how ideologies that champion using technologies "for the greater good" often disenfranchise, and in this case eugenically eliminate, those who have less power and have been deemed socially problematic. She told Biopolitical Times that it was her anger and disappointment over California's Prop 8 that led her to explore the question, "what happens when the majority can take away the rights a of a minority group?" Having come face to face in her own life with the emerging social and ethical questions around selecting sperm donors and their traits, Ganatra decided to unpack this question through the lens of reproductive technologies.
She added that her goal, and that of the FutureStates project as a whole, is not to deliver overly fantastic or dystopic stories but to capture the social realities of the present and predict their consequences for social justice in the not-so-distant future. "The great thing about sci-fi," she said, "is that one gets to ask the question, what if this wasn't just the worst-case scenario? What if that was only the beginning?"
Some sci-fi movies dwell on futuristic technological enchantments. In Beholder, Ganatra chillingly and persuasively shows what might happen if the social injustices of today are channeled through the technological possibilities of tomorrow.
The piece itself regrettably spells his name wrong, but Savulescu evidently accepts its substance, judging by the reply he gave to a response posted by an Oxford colleague, Neil Levy. Certainly the positions it describes are in line with views Savulescu has frequently expressed, for instance in his 2009 lecture "Genetically Enhance Humanity or Face Extinction" [videos here]. He backs away from that position a little in the Q&A, but the title is a reasonably fair summary of views he has advocated for a decade. In 2001, he published an article in Bioethics [pdf] titled "Procreative Beneficence: Why we should select the best children."
It is tempting now to write off Savulescu's opinions as predictable, but Levy's comment is surprisingly disturbing. He disagrees on the use of genetic modification, but only on empirical grounds:
The argument turns on the social benefits of enhancement. Economic modeling has mounted a powerful case that widespread enhancement of IQ would produce a broad range of benefits.…The question ought not to be "what are the costs and benefits of enhancing versus not enhancing", but "what are the costs and benefits of enhancing versus other ways of using the resources needed for enhancement"?
Radcliffe Richards refused to categorically reject the concept of forced sterilization as a solution to social problems, saying that there "is a really serious argument" about the "cost to the rest of society of allowing people to have children when you can pretty strongly predict that those children are going to be a nuisance."
At first blush, it's easy to accept Levy's view that "we will get much better returns for our money by spending it on environmental interventions, here and (especially) abroad, in developing nations." But there is something disquieting, to say the least, about viewing these human interventions simply through the prism of economics. The subjects here are human individuals.
Essentially these philosophers are all proposing that society should improve the IQ of the unfortunate in order to benefit society as a whole, rather than for the sake of the people directly affected. This is exactly what George Annas was referring to as eugenics in the recent discussion about forced sterilization. As he insisted,
This decision needs to be made based on the person's best interests, not the best interests of society or her caregivers.
These are difficult questions, as evidenced by libertarians like Savulescu advocating intervention for the "good of society" (while communitarians uphold individual rights). Savulescu is not a simplistic thinker, and to his credit engages with current issues. His critique of the HFEA, for example, is not without merit, especially when he says they should have insisted on long-term follow-up studies. But he has been pushing a modern kind of eugenics for a long time now, and the indications are that, in his field and especially in the institution he heads, he has shifted the terms of debate.
Finally, what is this "economic modeling" on which the argument depends? The Herald Sun article cites "a research paper by Oxford University ethicists Andres Sandberg and Nick Bostrom [both members of Savulescu's Oxford Uehiro Centre of Practical Ethics], showing that if overall IQs were raised by 3 per cent, poverty rates and the number of males in jail would both drop by 25 per cent and welfare dependence by 18 per cent." A search for the data turned it up in a 2006 paper [pdf], but it wasn't original to them. It was referenced to Herrnstein and Murray, 1994.
That's The Bell Curve, arguably the most controversial best-seller of its era because it claimed to identify racial differences in intelligence and draw policy conclusions from them. Stephen J. Gould, among others, put considerable effort into refuting it. Bob Herbert in the New York Times called it "a scabrous piece of racial pornography masquerading as serious scholarship." The book still has its supporters, obviously, but it's interesting to see it cited at second-hand; perhaps it's now too toxic to be considered convincing. The Uehiro philosophers presumably do not endorse its racism, but they do seem to share its eugenic approach.
The British Court of Protection says it needs further medical and psychiatric reports before it can rule on whether or not a 21-year-old woman with "significant learning disabilities" should be forcibly sterilized. The woman, identified as "P," is scheduled to give birth to her second child this week via C-section. P's mother, who currently cares for her daughter and grandchild, asked that the court order her daughter to be sterilized to avoid future pregnancies.
P's mother made it very clear that her daughter cannot comprehend that she is unable to care for her own children and that future babies will need to taken under the care of the state. P's mother and father express that they will be unable to care for future grandchildren.
"I want the best for my daughter…We are supporting and helping her, bringing up her children and keeping them together as family unit. Obviously we can't carry on supporting more and more children. She doesn't see anything wrong in her behavior."
P's mother said that they tried to get their daughter to take birth control injections after her first pregnancy, but she refused, and became pregnant again soon after. She thus feels that tubal ligation, an irreversible sterilization procedure, is the best course of action.
Judging from the courts decision to delay proceedings, as well as significant buzz in media and comment forums, it seems that many are struck by the enormous implications of sterilizing someone against their will. Although cases involving a mother and children's physical and social welfare should be looked at closely on a case by case basis, the prospect of using public policy to compel the sterilization of a vulnerable individual, or any individual for that matter, should throw up several red flags.
In the past, discriminatory social ideologies have been channeled through the courts to target vulnerable groups that were seen as "socially problematic," and therefore "unfit" to reproduce. State and national eugenics boards, at their height in the 1920's and 30's, facilitated the forced sterilization of tens of thousands. Especially targeted were poor black women in the American South, Native American women, and individuals (many of them children or teens) deemed to be "feeble-minded," of low IQ, or otherwise "mentally defective." These efforts, which extended to Europe as well, falsely and catastrophically attributed social "problems" to inheritable genetics, and justified eugenic intervention as furthering the "greater social good."
Thankfully, it appears that P's case has not followed this discredited script about "good" or "bad" genes. And although the Court of Protection normally deliberates behind closed doors, this hearing was made public (with protections for P's privacy) due to the "public interest" in understanding the case. A key point that should be made clear to all is that any decision to intervene in P's reproductive behavior is made in the sole interest of her personal health and well being - not because she has "learning difficulties." Any other action would be a violation of her human rights and reproductive freedom, and would perpetuate social injustice for others who are cognitively or otherwise differently-abled.
Chair of Health Law, Bioethics & Human Rights at Boston University, George Annas, noted,
"This is eugenics if they are doing this because she's mentally disabled…This decision needs to be made based on the person's best interests, not the best interests of society or her caregivers."
The Court of Protection must tread extremely carefully in its ruling on this case. Questions of whether or not P is cognitively capable of consenting to sexual intercourse must also be addressed. Other contraceptive methods, which are less invasive and reversible, should certainly be seriously considered, as they surely would be for a person without learning disabilities.
The slippery slope of eugenics emerges when attempts are made to control the reproduction of targeted categories of people. Anything less than the most careful and deliberate effort to avoid such missteps would be a failure to learn the lessons of the horrific history of eugenic sterilization.
*To read the author's interview about P's case in Salon Magazine, click here.
When we ridicule "genes of the week" we are usually pointing fingers at the press, or at scientists trying to exploit the press for publicity. We often play it for laughs, though we are well aware that genetic hype can have important and very disturbing consequences, some of which are not immediately visible.
But a case just came to light that might have cost someone two extra years or more in prison.
On December 3rd, 2009, U.S. District Judge Gary Sharpe sentenced Gary Cossey to 6-1/2 years, plus a life term of supervision thereafter, for possession of child pornography. This was a higher than expected sentence, albeit within the broad legal guidelines.
Judge Sharpe chose to reject two different psychological evaluations that found Cossey to be at a low to moderate risk of re-offending, calling their opinions "virtually worthless" because the profession is "all over the board on those issues." Instead, according to the written judgment of the Appeals Court, Sharpe needed "to share a view that's a little different than what you're hearing from your psychiatrists." In particular:
[Judge Sharpe] predicted that some fifty years from now Cossey's offense conduct would likely be discovered to be caused by "a gene you were born with. And it's not a gene you can get rid of."
Sharpe noted that the defendant was in therapy, but was not impressed, saying that:
"[It] can only lead, in my view, to a sincere effort on your part to control, but you can't get rid of it. You are what you're born with. And that's the only explanation for what I see here."
This is eerily reminiscent of the Violence Initiative of the early 1990s, and other biological explanations of crime (as described, for instance, in The Criminal Brain by Nicole Rafter). And, of course, of the eugenic approach that designates certain people, or types of people, as lost causes that society would be better off without.
Where a district court relies on its own scientific theories of human nature to sentence a defendant, as it does here, a finding of plain error is warranted.
(The use of the term "scientific" is overly polite.)
The case has been remanded to a different judge for sentencing. Judge Sharpe has so far refrained from comment, but we are left with a disquieting question: Was he merely more honest than many of his peers? Is this kind of inevitablist, genist thinking common among the judiciary? Or, indeed, among politicians and other opinion leaders?
A secretive group of independent, influential scientists who advise the United States government on science and technology recently released The $100 Genome: Implications for the DoD. Perhaps unsurprisingly, it pays little attention to the larger social and ethical questions raised by such technology.
The group, known as the Jasons, was asked to consider the impact of personal genomics over the next decade and to assess the opportunities and challenges of the field for the Department of Defense (DoD). The report concluded with the following recommendations:
Establish procedures for the collection and archiving from all military personnel DNA samples that are compatible with subsequent genotype determination.
Plan for the eventual collection of complete human genome sequence data from all military personnel.
Arrange for the secure, long-term storage of DNA sequence data.
Prepare for the collection of epigenome and microbiome data when appropriate.
Determine which phenotypes are of greatest relevance to the DoD.
Cooperate with health care professionals to collect and store these data.
Use bioinformatics tools to correlate genetic information with phenotypes to discover linkages between the two datasets that will ultimately allow genotype information to be used productively.
Some critics have begun to raise important concerns about the recommendations. Secrecy News and The Huffington Post both ran articles (1,2,3) raising a number of concerns regarding privacy, exploitation, discrimination, and eugenics.
Steven Aftergood of Secrecy News writes:
What could possibly go wrong? Quite a few things, actually. Besides the risk of failing to maintain the privacy and security of genetic data, the data could be used in unethical ways or their significance could be misinterpreted. ... Acting on genotype information that is not convincingly linked to specific phenotypes could lead to erroneous and detrimental decision making.
Aftergood, quoted in The Huffington Post, also discussed privacy concerns and exploitation:
Questions about control and exploitation quickly become front and center … I think all of us should be concerned about the advancing state of genetic research and its susceptibility to improper or thoughtless use.
It lends itself to corporate control and for-profit exploitation of genetic data, which is the most intimately private information there could possibly be. Your genetic code is more private and more unique to you than anything else in the universe.
While the report does acknowledge the need for “resolution of ethical and social issues that arise from these activities,” it fails to do much more beyond this in thinking about potential implications of gathering DNA from soldiers. A spokesperson from the Pentagon says that it is seeking input from others on the issue. But Ann Finkbeiner, author of a book on the Jasons, suggests that they are highly influential: “My feel for the track record is that they are taken very seriously … and I think a lot of their ideas sort of end up in programs.”
Leilani Muir, forcibly
sterilized by the Alberta
government at age 14.
The University of Alberta's historical connection to state-sponsored eugenics made it an ominously appropriate setting for last week's Living Archives on Eugenics in Western Canada Conference. The event gathered historians, community members and victims to re-examine the history of forced sterilization in the province.
The conference reflected on local eugenics past and present, highlighting the Alberta Sterilization Act (ASA), effective from 1928 to 1972, which led to the forced or otherwise coerced sterilization of 2,800 people deemed "mentally unfit." Leilani Muir, whose successful 1995 lawsuit made her the ASA's most well known victim, spoke on the importance of amplifying voices of sterilization victims.
We've gotta make sure this never happens again because my attitude is if I don't talk about this and keep it out forefront, history will repeat itself in some way because history always does repeat.
Others used the ASA's historical context to frame modern eugenic problems, such as socially based reproductive disenfranchisement of the intellectually disabled. One speaker noted,
We've significantly restricted people's access to sexual and reproductive health information and as it pertains to people with intellectual disabilities, our focus has been largely on prevention by isolation and that seems to be our most effective sterilization strategy in the modern age.
This event's acknowledgement of past eugenics in relation to modern reproductive injustices represents a wider societal responsibility largely unfulfilled in North America. Of the thirty-three US states that sponsored eugenic sterilization programs, only a handful have issued formal apologies; even fewer offer ongoing support for victims.
However, formal political apologies alone fall far short of what is needed to prevent these histories from repeating themselves. Communities should follow Alberta's lead, endorsing public discussion and education that examines modern reproductive and disability rights issues - including the wider social implications of IVF, PGD and trait-selective abortion - in the light of past eugenic follies.
Project Prevention is a controversial U.S. nonprofit that pays $300 to drug addicts who volunteer for long-term birth control, which often means sterilization. It has operated since 1997, originally as Children Requiring A Caring Kommunity (CRACK), just expanded to Britain (at £200), and plans to cover Australia and perhaps Africa.
The British operation, which is funded by a single $20,000 donation from an American expat, has been controversial since at least March. The noise spilled over to Time magazine in April, which quoted a London-based treatment agency as calling Project Prevention "morally reprehensible and irrelevant," and continued in May. The storm reached a crescendo in October, when, one British man accepted the cash for a vasectomy, in a televised ceremony. Some are even reported as accusing the group of "genocide" and, more circumspectly, former UK home secretary David Blunkett said:
"My big worry is that, whatever the good intentions, this money is likely to go straight into the dealer's hands as they buy a £200 tranche of heroin or crack."
In the face of this torrent of criticism, the founder, Barbara Harris, remains extremely sure of herself and somewhat cavalier in her attitudes, for instance saying:
"If they want to tell their doctor, that's their choice - we don't communicate with doctors."
That seems odd: Her organization is predicated on the irresponsibility of the clients, and yet she blithely abdicates any liability to ensure they get proper medical advice. And then there is an infamous comment that she has repeated rather than retracting:
"We don't allow dogs to breed. We spay them. We neuter them. We try to keep them from having unwanted puppies, and yet these women are literally having litters of children."
Some of the publicity may seem a little overblown. After all, precisely one Briton has taken the money (incidentally, he seems not to conform to the stated rules that addicts they pay already be parents), and in 13 years, Project Prevention has paid for only 1319 women to have tubal ligations, as well as for 54 vasectomies and 2227 clients who adopted other forms of long-term birth control, such as IUDs, Depo-Provera, etc. That hardly seems like an efficient use of "half a million dollars a year in donations," from a donor base that includes the billionaire Republican Richard Scaife.
Women with substance abuse problems need drug treatment, decent jobs, educational opportunities, mental health services, and childcare services. It is the lack of these services and the denial of human dignity, which exacerbate conditions of poverty, racism, social status and gender discrimination. These conditions can lead to women seeking out substances to medicate pain. Therefore, it is oppression that needs to be eliminated, not the reproductive capacity of women.
Cover from a 1934 film on the "secret" horrors of forced sterilization
Darlene Gabler, a 64-year-old woman from Alberta, Canada, is suing the provincial government for sterilizing her in 1961 without her knowledge or consent. Gabler is one of over 2,800 victims of the Alberta's Sexual Sterilization Act, which between 1928 and 1972 irreversibly sterilized children and teenagers (4,700 people in total) deemed "mentally defective" and/or "incapable of intelligent parenthood."
Up until the late 1970s, 30 U.S. states, two Canadian provinces and at least five other countries adopted programs similar to Alberta's, forcibly sterilizing tens of thousands deemed "reproductively unfit." Despite efforts by disability rights activists, historians of eugenics and others, public awareness and education around these atrocities has been seriously lacking in the decades since.
It is disturbing that Ms. Gabler's case and others like it seem to be among the few items "press-worthy" enough to shed light on the horrors of past compulsory sterilization practices in North America. On top of that, several local press outlets did miserable jobs covering Gabler's case, running simplistic, even stigmatizing headlines like "Sterile Woman sues Alberta gov." Unfortunately, media coverage of these cases usually concentrates on the details of individual legal cases, and fails to convey the deeper eugenic contexts behind them.
While justice for victims like Darlene Gabler is overridingly important, the wrongs of state-sponsored sterilization programs exceed the legal frameworks in which they are too often framed. Relegating these crimes to categories such as "assault" or "medical misconduct" runs the risk of boiling them down to quantifiable individual harms that can be righted in a courtroom. Meanwhile, the underlying iniquities of eugenics in general, and the fact that these ideologies persist in many forms today, remain unacknowledged.
Although the Alberta government offers some monetary reparations to its victims, placing it ahead of the curve in taking formal responsibility, a "put the past behind us" mind-set endures in other parts of the community. The University of Alberta still awards the prestigious MacEachran Scholarships in honor of the late Professor Emeritus John M. MacEachran, an outspoken eugenicist and chair of the Alberta Eugenics Board from 1929 to 1964. Public objections to this have been admirable but few [1, 2].
It is imperative that state and national governments, universities, and public voices alike more widely acknowledge past sterilization programs. The word "eugenics," when rarely mentioned in the media or in public education or discourse, is too often conveyed as something that happened a long time ago in a far-off place. Continuing to bury local histories of eugenic practices like forced sterilization will further obscure the thousands of victims who have yet to come forward as well as the memories of those who never had that chance. Silencing those voices also denies the rest of us the opportunity to remember our collective past, and could condemn us to repeat it.
The Nobel Prize in physiology or medicine has been awarded to Robert Edwards, for his work on developing IVF. (Edwards' partner, Dr Patrick Steptoe, died in 1988 and is thus not eligible.) Immediate reactions were, overall, strongly favorable: "You would have to be a very determined killer of joy — or a Vatican priest — to begrudge Professor Robert Edwards his Nobel Prize." Soon, however, the announcement became the basis of wider speculation and analysis.
"The impact on society has been profound," said Lori B. Andrews of the Chicago-Kent College of Law, who studies reproductive technologies. "The creation of a child outside the body for the first time has had scientific and personal implications far, far beyond the 4 million children who have been born through in vitro fertilization."
Arthur Caplan (quoted in several articles) added: "Edwards unleashed a social, ethical and cultural tsunami that he could not have predicted and I don't think anyone at the time could have anticipated." He also speculated:
"In the 20th century, I would argue the biggest debate in America in terms of reproduction has been abortion. I believe in the 21st century, Edwards's discoveries will make the issue of designing our descendants — that is, trying to create children who are stronger, faster, live longer, that sort of thing — that's going to become the biggest issue in the first half of the 21st century."
"The ramifications of Edwards's breakthrough have really only begun to be felt, because the race for biomedical enhancement will be in the 21st century what the space race was in the previous century. I don't think we'll get to the point of permanently changing the human genome, but we will be manipulating ourselves at a genetic level ... and IVF allows us to do that."
Without being very specific, Nita Farahany, a member of the Presidential Commission for the Study of Bioethical Issues, told Jonsson that IVF "could raise issues that may be relevant to the work of the commission."
Robin Marantz Henig published an Op-Ed in the New York Times that cast a rather rosy light on these possibilities:
It has also opened the door to new controversial concepts: "designer babies," carrying certain selected genes; pre-implantation genetic diagnosis, which allows the possibility of choosing the baby's sex; and human cloning. ...
Science fiction is filled with dystopian stories in which the public blindly accepts destructive technologies. But in vitro fertilization offers a more optimistic model. As we continue to develop new ways of improving upon nature, the slope may be slippery, but that's no reason to avoid taking the first step.
Edwards, it seems certain, would agree. Unfortunately, he is now too ill even to understand that he has received the award, but in 1999 he said:
"Soon it will be a sin of parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children."
In 2003, he told the London Times that he supported reproductive cloning, as long as it was safe, and sex selection, and stood by his long-standing admiration for the maverick Italian Severino Antinori. (He has enthusiastically supported the purported cloner Panayiotis Zavos as well.) His most provocative quote deliberately extended the agenda:
"It was a fantastic achievement but it was about more than infertility. It was also about issues like stem cells and the ethics of human conception. I wanted to find out exactly who was in charge, whether it was God Himself or whether it was scientists in the laboratory."
And what did he conclude? "It was us."
That's eerily reminiscent of the unscrupulous, and eventually jailed, fertility doctor who claimed "God doesn't make babies, I do" (quoted on p. 78 of Lori Andrews' The Clone Age). It also brings to mind the "Octomom"
controversy, which led to some calls for tightening regulations. And
the push last year to sell the selection of physical traits such as eye color.
Undoubtedly the achievement of Steptoe and Edwards is worth celebrating, for the many otherwise infertile people who have benefited. But a sober assessment of the implications, and the potential for abuse, is essential for context. This is not just a dual-use technology; it's already one with multiple applications, and some of them involve serious complications, both for the people directly involved and for society at large.
Here's a headline designed to grab attention: "Building a Brighter Kid: Consider IVF." It appeared in Time Healthland on October 1st. It's a classic case of a headline that betrays the writer of the article, and one that could easily become the source of an urban legend. So let's try to stop it right here.
IVF does not negatively affect academic achievement
Radio Iowa reported on this under the headline "Study finds no adverse impact on in vitro babies." The Los Angeles Times went half a step further:
Children conceived by IVF score well, often better than peers, on academic tests, study finds
Why would that be? The researchers, who studied 423 IVF-conceived children aged 8 to 17, plus 372 of their non-IVF peers, did attempt to control for socioeconomic and environmental differences, but acknowledged that they may not entirely have succeeded. Indeed there is a quote in the Time article itself from fertility specialist Dr Robert Stillman:
"Those fortunate enough to be able to afford IVF in an arena where there's little insurance coverage may very well have the means to provide a high level of education for their children."
"We are not trying to imply that [in vitro fertilization] leads to better scores," lead author Bradley Van Voorhis told the Daily Iowan. And there is good reason to think that the Time writer, Bonnie Rochman, understood this. Her article ended:
You might be interested to learn that the researchers found that single babies performed better than twins, who performed better than triplets — if only ever so slightly. But even the triplets performed better than the average score of children conceived the old-fashioned way.
Still, that's no reason to rush into IVF if you don't have to. Says Stillman: "This is an argument not for doing IVF to have brighter kids but for having insurance coverage so everyone can have a child if they're having trouble getting pregnant."
But that's not what the headline writer picked up on. Instead, we have an implication that "building" smarter children to order is not only defensible but feasible. And that is seriously misleading.
There have recently been several disturbing indications in Europe of racism with a genetic twist:
In Holland, Patrick de Bruin, a neo-Nazi, donated sperm on condition that it should only be used for white couples: "I want as many blond blue-eyed children to be born as possible." Two sperm banks initially accepted his conditions, though others turned him down.
In Sweden, Per T K Wahlberg, a minor politician, claimed that Africans have a "child rape gene." This was too much even for the far-right party to which he belonged, and he quit.
In Germany, Bundesbank board member Thilo Sarrazin told a newspaper that Jews share a distinguishing gene, and Basques share another; he also claimed that Muslims could not or would not integrate into western societies. He was promoting a book, Germany Abolishes Itself, and got so much publicity that he was forced to resign.
Ironically, in Israel, comments about "the Jewish gene" have been made by leading politicians without causing any comparable fuss. Also, it must be noted, without scientific justification. In August, Eli Yishai, currently one of four Deputy Prime Ministers, told the Jerusalem Post:
"A convert, if he converts through the Orthodox, he has the Jewish gene. If he doesn't convert through the Orthodox, he doesn't have the Jewish gene. As simple as that."
The idea of a "gene for Judaism" or an African "gene for rape" may be absurd, but it is also potentially dangerous, since it links crackpot racism with overstated genism. DNA has been promoted as an indisputable identifier in criminal matters, not to mention the ancestry and disease-prediction industries. Early last year, we saw calls for a Turkish politician to have his DNA tested to prove he was not Armenian. What's next? DNA testing for immigrants? For tourists?
Thus far, the mainstream reaction has been harsh criticism of racist statements. But Sarrazin's book is flying off the shelves (four printings total 80,000 copies), and he has his defenders, as does de Bruin (see comments here) and even Wahlberg (comments). There is a continual need to remind people that the well-meaning racists of the early twentieth century gave rise to the genocidal maniacs of mid-century. Eugenics is not far beneath the surface of modern politics.
Later this month, University of Minnesota researchers plan to enroll volunteers at the Minnesota State Fair in what they're calling the "Gopher Kids Study." They are looking for 500 pairs, each consisting of a child age 1 to 11 and a biological parent. The idea is to investigate the genetic features of "normal and healthy" children, by collecting body measurements, saliva, and optional blood and fingernail samples for genetic analysis.
What's wrong with this study? Almost everything.
First off, the study's consent form [PDF] is disgracefully inept. It lacks, among other things, specific intentions or limitations for what the samples can be tested or used for. It states that participants' DNA samples will be "kept indefinitely" and made available only to "study staff," though no institutions or individuals (aside from the two head researchers) are specified by name. These two critical concerns about to what ends and by whom this information can be used, dispersed, or profited from are left egregiously unspecified.
Research that uses your and your child's DNA might be done a long time after they are collected…[and] will be used for research by Logan G. Spector, Ph.D. and his associates for the purposes of learning more about genetics in growth and development.
Secondly, the chaotic and otherwise jovial atmosphere of a state fair could not be further opposed from a clinic, lab, or other appropriately focused setting for gaining fully informed consent. The frivolous state fair surroundings paired with the study's colorful, kid-friendly marketing will (by design, no doubt) distract from the fact that handing over your child's DNA is a serious, multi-dimensional decision. The public should be enabled and encouraged to realize that there is more at stake in such a decision - privacy, future exploitation, and the like - than some university swag and free tickets to next year's fair.
Finally, the stated objective for the study is ambiguous at best: "To understand how genes contribute to children's normal health and development." Aside from being scientifically meaningless, this inquiry suggests that there is a genetically defined ideal for normal, healthy children. Such a notion recklessly capitalizes on the growing public obsession with genetically deterministic models of health - a harmful trend evidenced in recent controversies around direct-to-consumer genetic testing and prenatal trait selection.
Activities that search for "good" and "normal" genes at state fairs have a troubled history. Recall the "Fitter Family" contests of the early 20th century, which were explicitly eugenic attempts to judge human stock like cows and pigs and chickens.
Genewatch UK marked the 10th anniversary of the Human Genome Project announcement by publishing an extraordinary History of the Human Genome that includes important current policy implications. It runs to 17 tightly-packed pages, with a further 12 pages of references (303 of them). The pdf is available here, with a summary in Genewatch’s press release here.
The timeline reaches back to 1918, when "Eugenicist Ronald Fisher publishes a mathematical paper showing how common diseases might be caused by genetic susceptibility to environmental exposures," which becomes the initial basis for calculating the "heritability" of diseases (later criticized by Richard Lewontin and others). History of the Human Genome covers in detail the tobacco industry's attempts to obfuscate the links between smoking and cancer by arguing for genetic predispositions both to smoke and (separately) to get cancer. It also notes many other attempts to find genes for cancer, obesity, diabetes and other diseases.
The report connects these essentially false theories with the massive "gravy train of funding for the human genome" -- and with the centralization of medical records, systems for storing babies' DNA at birth, and also the research goals of companies such as 23andMe:
Billions in taxpayers' money has been wasted in both Britain and the USA, and medical privacy has been jeopardised, in an attempt to create the vast databases of electronic medical records linked to DNA that will supposedly allow scientists to 'predict and prevent' disease. ...
The private healthcare and food industries are promoting a new vision of healthcare in which people will have their genomes sequenced in supermarkets and stored on mobile phones. Healthy people will be marketed bar-coded functional foods - such as cholesterol-lowering margarines and probiotic yoghurts - and other health tests, advice and treatments, which are claimed to be tailored to their genetic risks of future diseases. Sequencing everyone's DNA linked to their name and address stored in electronic medical records would also allow the Government to track every individual and identify their relatives.
"Vested interests have fatally corrupted the medical research agenda. Companies want to data-mine your DNA and market healthy people misleading risk assessments and associated products: this is not medical research. Having your genome sequenced is not good for your health: the big risks for most diseases are not inside your genes but in the world outside."
BeautifulPeople.com has launched a fertility introduction service to help members and non-members alike procreate. There are no financial benefits for us in doing so - we are simply responding to a demand for attractive donors. Every parent would like their child to be blessed with many fine attributes, attractiveness being one of the most sought after. For a site with members who resemble Brad Pitt, George Clooney and Angelina Jolie you can imagine the demand.
The website’s founder, Robert Hintze, also notes “Initially, we hesitated to widen the offering to non-beautiful people. But everyone - including ugly people - would like to bring good looking children in to the world, and we can't be selfish with our attractive gene pool."
There is an almost casual reference to "a future where humans break off into two species: the Haves, who have superior intelligence and can live for hundreds of years, and the Have-Nots, who are hampered by their antiquated, corporeal forms and beliefs." (Lee Silver used the terms GenRich and Naturals to describe something very like this, but that was back in 1997 -- before Google was even, pardon the pun, incorporated -- so new labels are required.) The article continues:
Of course, some people will opt for inadequacy, while others will have inadequacy thrust upon them. Critics find such scenarios unnerving because the keys to the next phase of evolution may be beyond the grasp of most people.
Well, some critics actually object because this entire approach to the future reeks of self-indulgent privilege, greed and exploitation. But there is a deeper and more important point to be made.
Another term that is not included in the article is eugenics. Arguably, this is because there is in fact no proposal to "improve" humanity, merely a goal of "transcending" it. But that's nit-picking. The eugenic impulse has always been one of control, of domination, of decisive intervention into the human condition, by the powerful of this world (who see themselves as deserving, intelligent and fundamentally moral) on behalf of the deserving, intelligent and fundamentally moral.
Modern techno-utopians may not call themselves aristocrats, but they are -- at best -- following the same principles of paternalistic governance. There are those, however, who seem to have given up on the unwashed masses. Andrew Orlowski, a techie journalist who is a long-standing critic of "utopian nonsense," says:
"The Singularity ... is rich people building a lifeboat and getting off the ship."
For some of them, that's a metaphor; for others, it's actually a plan. Billionaire Singularity enthusiast Peter Thiel (PayPal, Facebook) has tossed half a million bucks to the idea of "seasteading" -- building new off-shore city-states.
Techno-utopians are the heirs to the eugenic tradition. Their methods are not those of Francis Galton, who advocated the breeding of aristocrats, nor are they those of the Eugenics Movement of the early 20th century, with its advocacy of selective sterilization. But the dissatisfaction with the human condition and the determination to overcome it is the same. Some of these people are rich, smart, powerful and dangerous. They may be fun and they may be friendly -- they may even be out to save the planet -- but they definitely bear watching.
The legacy of 20th-century eugenics is still with us, and two complementary new initiatives have just been announced to help us confront it.
North Carolina, which has been slowly addressing the moral obligation to compensate victims of involuntary sterilization, has appointed an advocate for them: Charmaine Fuller Cooper is the new executive director of the N.C. Justice for Victims of Sterilization Foundation, which has start-up funding of $250,000. "I aim to give them a voice," she wrote, "so nothing like this ever happens in state government again." Her official charge is "to develop a plan to provide justice and compensate victims of the so-called eugenics program, which forcibly sterilized more than 7,600 people between 1929 and 1974."
In Canada, the Social Sciences and Humanities Research Council of Canada has awarded a million-dollar grant for "Living Archives on Eugenics in Western Canada" [pdf]. A team of 24 researchers from 14 institutions, plus 12 other partner institutions, will explore the history of Alberta's eugenics laws, which operated from 1929 to 1972. Institutions involved range from local universities to the Edmonton Police and the Edmonton Public Library, as well as the Universities of Copenhagen and North Carolina, the Public School Boards' Association of Alberta, the American Association of People with Disabilities, and many more.
They intend to accumulate documents and place them in the public domain, along with first-hand testimony from sterilization survivors. The lead investigator, University of Alberta professor Robert Wilson, says they don't yet know what they will discover:
"A number of us think it's really timely to look at these things now we've got an appropriate amount of distance. But it's important that this work be done in the next five or 10 years because the people who we could use as major sources and the people who want to tell their own stories [...] are getting old."
Those who cannot remember the past are condemned to repeat it, said George Santayana. The surviving victims deserve help, and we all need to remember what happened.
Rebecca Skloot’s just-released first book, The Immortal Life of Henrietta Lacks, has rocketed to the number 5 spot on The New York Times list of hardcover nonfiction best-sellers. Skloot’s deeply researched and riveting narrative ranges over a treasury of fascinating yet often painful stories behind the first “immortal” human cell culture.
The cell line known as HeLa (the first letters of the first and last names of the person who was its source) is amazingly robust. As long as it’s got some culture medium, it just keeps on dividing. HeLa was derived in 1951 from cervical cancer tissue that doctors took without consent from a 31-year-old African American woman who died of the disease in the “colored ward” of the Johns Hopkins charity hospital in Baltimore. For several decades, her name and identity were all but lost, and her family members remained unaware that her cells had become a foundation of medical research. As one of Mrs. Lacks’ children put it many years later, “If our mother so important to science, why can’t we get health insurance?”
Immortal Life is being deluged with well-deserved attention. The New York Times, for example, published an excerpt and three different reviews, all of them glowing. Reviewer Dwight Gartner calls it a “thorny and provocative book about cancer, racism, scientific ethics and crippling poverty.” Lisa Margonelli praises its thoughtfulness about “the `real live woman,’ the children who survived her, and the interplay of race, poverty, science and one of the most important medical discoveries of the last 100 years.” Margonelli also voices appreciation of the book’s “critique of science that insists on ignoring the messy human provenance of its materials.”
And science writer Denise Grady points out that although practices and ideas about informed consent have changed in the last 60 years, “patients today don’t really have any more control over removed body parts than Mrs. Lacks did. Most people just obediently sign the forms.”
As these comments suggest, a number of the topics raised by The Immortal Life of Henrietta Lacks resonate with the concerns of Biopolitical Times. One of the book’s historical vignettes, on the early development of cell culture, provides an intriguing parallel to today’s biopolitical dilemmas.
Skloot recounts the many years of effort spent by scientists in the early 20th century to learn how to keep tissues alive outside the body. In 1912, a scientist named Alexis Carrel succeeded in growing a sliver of chicken-heart tissue in culture, and asserted that the cells were immortal. The feat was greeted as a medical miracle. Contemporaneous headlines called it a “way to avert old age” and speculated “Death Perhaps Not Inevitable.” The culture medium Carrel had concocted was referred to as “an elixir of youth” and a magazine “claimed that bathing in it might make a person live forever.”
And that’s not all. Skloot points out that Carrel, who at age 39 won a 1912 Nobel Prize for his contributions to organ transplantation and techniques for suturing blood vessels, was an avid supporter of eugenics. He “wasn’t interested in immortality for the masses” – he presented his work on organ transplantation and life extension as “ways to preserve what he saw as the superior white race, which he believed was being polluted by less intelligent and inferior stock, namely the poor, uneducated, and nonwhite.”
Carrel’s 1935 book, Man, the Unknown, sold more than two million copies and was translated into 20 languages. Thousands turned out for his talks, where police in riot gear were sometimes needed to keep order. And “through all of this, the press and public remained obsessed with Carrel’s immortal chicken heart.” Media accounts “promised the cells would change the face of medicine, but they never did.” Carrel died in 1944 awaiting trial for collaborating with the Nazi.
Cell culture, it seems in retrospect, was to the 1910s what gene therapy was to the 1990s and stem cells to the 2000s. All were important scientific developments that, notwithstanding their promise, were more than marginally connected to hyperbolic claims (1, 2), violations of ethical practice (1, 2), and high-profile scientists whose distinguished reputations were marred by controversy and scandal (1, 2).
Two years ago, direct-to-consumer (or personal) genomics was the all the buzz. Media coverage was rampant, often the result of 23andMe's remarkable PR blitz of celebrity-laden "spit parties" in Davos and New York. Flash forward to the present: coverage is slim and the companies are suffering, including layoffs and one major bankruptcy. To where does the fledgling industry go from here? Three companies offer contrasting examples: The most visible one may be using a flawed business model and product. The oldest, and bankrupt, one has a troubling track record of privacy and consent. And a new one takes a new, and potentially problematic, approach.
Personal genetics was the next big thing: what celebrities and moguls were buying today, the masses would be buying tomorrow. 23andMe and rivals such as [bankrupt] deCODE Genetics, Navigenics and Pathway Genomics would do for DNA what Google and Amazon did for the internet. The genetic future was now.
Eighteen months on, that future stands postponed. Many doctors have rejected the hype about a new era of personalised medicine, arguing that most genetic screening is as likely to mislead as to inform. Neither have the public taken to consumer genomics: 23andMe, the market leader, has signed up only 30,000 subscribers in two years and has endured two rounds of redundancies....
Have science entrepreneurs such as [23andMe's Anne] Wojcicki and Kári Stefánsson, deCODE's founder and chief executive, jumped into a market for which the world is not ready? Will their companies prove to be the genome's Googles and Amazons, or its Boo.com?
I've long been of the mind that, just as the traditional business model of newspapers is to get revenue not from readers but from advertisers, personal genomics companies see the potential profit not from the consumers themselves but from the compiled databases--likely in the form of selling access to them. One key question is, just how reliable is this data? For example, 23andMe uses consumers' self-reporting:
But there is disagreement about the scientific worth of such a database. Stefánsson thinks [23andMe's data] will be useless because self-reported traits are unreliable and customers will object to the release of information. However, 23andMe says that the plan is already working and has led to the discovery of genetic variants linked to traits such as the curliness of hair. If this approach can be repeated with, say, responses to drugs, it's easy to see how a pharmaceutical company might bite.
This strikes me as wishful thinking at best. Consumers can likely self-report the curliness of their hair with significant accuracy. But I am skeptical about their ability to do the same for reactions to drugs, considering, for example, the remarkable (and rising) effectiveness of placebos.
What interests me more is the fate of the databases. As pressures to turn a profit mount during the Great Recession, and as companies such as deCODE, which recently filed for bankruptcy protection, are saved by new investors and subsequently restructured, what becomes of the data?
23andMe insists it will never release identifiable information to a third party without the explicit consent of the person concerned. "I'm always careful when I say we're going to have a revenue stream from the database," Wojcicki says. "We will not sell individuals' data, but the database as a whole will have enormous value."
Explicit, informed consent when purchasing a product online is difficult to truly obtain. When was the last time you read a user agreement when installing software?
Stefansson and deCODE have been adamant that the change in ownership will not affect how the company uses data from customers of its deCODEme service, or the security of that data, but this is an issue that will continue to bear watching. As I’ve written elsewhere, deCODE’s new owners remain (legally) free to alter or expand their use of genetic data within a range of allowable uses.
The company’s announcement also refers in several places to genomic sequencing, and as Jocelyn Kasier first reported last fall, deCODE is planning to sequence the complete genomes of 2500 individuals from its Icelandic database by mid-2011 as it continues to search for the rare variants that may contribute some of the so-called “missing heritability” to common diseases and traits. According to Stefansson, deCODE “will not need to recontact these individuals for consent because their original consent agreements cover whole genome sequencing.”
As Stefansson and others continue to note, genomic research has already begun the transition from genotyping to whole-genome sequencing. Moving from examining a handful – even thousands – of an individual’s genetic markers to the sequencing of his or her entire genome creates the potential to understand that individual in much greater detail. It also carries with it a new and expanded set of considerations and risks that should impact any informed consent process....
What I do know is that deCODE has a history of aggressively interpreting when and where individualized informed consent is not required. The failed Icelandic Health Sector Database, which deCODE was instrumental in designing, relied on the now-discredited principle of “presumed consent.”
Just today, The New York Times profiled Counsyl, a new entrant into the field that is just now moving into the public eye. It explicitly targets prospective parents, arguing that preconception genetic testing can prevent the transmission of some diseases. In fact, the company (among whose advisors and investors is Henry Louis Gates (1,2)) frames their work as a "Campaign to End Preventable Genetic Disease."
To their defense, Counsyl emphasizes and currently tests for fatal and serious genetic diseases (although I am admittedly unfamiliar with many of these rare conditions). Furthermore, it backs up its argument that genetic testing is a right by offering financial aid for those who can't afford the $350 test, emphasizing that "Underserved groups and families with a history of genetic disease will receive priority."
But on the other hand, Counsyl makes a couple of significant misrepresentations. Its website says "Everyone is supposed to g