|Human Gene Editing: A Timeline of CRISPR Cover StoriesWith recent gene editing tools, a number of high-profile media are featuring CRISPR on their covers and front pages. We gather highlights since early 2015, along with opinion polls, TV shows, and editorial board statements.|
|The "Outing" of Sperm Donor 9623, Biopolitical TimesJuly 1st, 2016A lawsuit by families who used the sperm of a "schizophrenic felon" lands at the complicated intersection of fertility clinic negligence, genetic reductionism, disability, and eugenics. |
|We Are Not Ready to Edit Human Embryos Yet, TimeFebruary 2nd, 2016Due to our insufficient knowledge, the slippery slope to human enhancement, and the global ban on human experimentation, we need to better understand the software of life before we begin re-writing this code.|
|A Monkey Circles in a CageJanuary 29th, 2016Researchers created transgenic monkeys with a gene duplication associated with Rett Syndrome autism in humans, raising concerns of the limits and ethics of using animal models in biomedical research.|
|CRISPR helps heal mice with muscular dystrophy, Science/AAASDecember 31st, 2015Three research groups report using CRISPR in mice to modify a gene associated with Duchenne muscular dystrophy, the first time CRISPR has been delivered throughout the body to treat grown animals with a genetic disease.|
|Gene Therapy: Comeback? Cost-Prohibitive?November 19th, 2015Recent CRISPR news sometimes confuses germline modification - which should be put off limits - and gene therapy, which presents its own set of social and ethical risks to resolve before rushing to market.|
|Better Babies, AeonNovember 17th, 2015The long and peculiar history of the designer human, from Plato’s citizen breeders to Nobel sperm banks, and the latest iteration of human genetic perfectability: CRISPR gene editing.|
|UK Womb Transplants: 5 Ethical Issues, Live ScienceOctober 5th, 2015The procedure would expose both patient and developing fetus to autoimmune suppressants, use uteruses from deceased donors, and require that clinical patients have a "long-term partner."|
|Womb transplants given UK go-aheadBBCSeptember 30th, 2015Ten women will be chosen for a clinical trial that will transplant a donated uterus, monitor organ acceptance for a year, and initiate up to two IVF pregnancies before removing the transplant.|
|Can 23andMe have it all?, ScienceSeptember 25th, 2015The company has made about 30 deals with biotech and pharma companies, and plans to hire 25 scientists in the next year to begin drug discovery efforts of its own.|
|Does Down Syndrome Justify Abortion?, New York TimesSeptember 4th, 2015In a typical pregnancy, women who choose to have an abortion are often saddled with shame and social stigma. Meanwhile, there remains significant stigma associated with being the parent of a child with special needs.|
|The Scope of Eugenics: A Workshop, Biopolitical TimesMay 27th, 2015The four-day workshop, organized by the Edmonton-based Living Archives Project on Eugenics in Western Canada, brought together early-career scholars interested in eugenics to discuss historical models and forms of "Newgenics."|
|FDA Regulation and Early Prenatal TestingFebruary 5th, 2015The information that accompanies prenatal testing should be accurate, complete, useful, and most of all nondirective. The ads for early prenatal tests do not meet these criteria. |
|An End to Sterilization Abuses in California Prisons, Biopolitical TimesSeptember 26th, 2014The signing of SB 1135 into California law by Gov. Jerry Brown is an important victory in the fight for the remembrance of our state's eugenic history and its ongoing implications.|
|Richard Dawkins Gets it all Wrong, Yet Again , SalonSeptember 25th, 2014As a social media event, the Dawkins kerfuffle was fleeting, but as a conversation, it offers a glimpse of a larger question: How do “we” — that is, the non-disabled — think about people with intellectual disabilities?|
|Disability Will Never Be Immoral , Biopolitical TimesAugust 29th, 2014Prenatal genetic testing can be a valuable tool, but it provides strikingly limited data. Events of this summer, including the abandonment of Baby Gammy and shockingly intolerant comments from Richard Dawkins, speak to the risk of conflating one type of information with a broader reality.|
|Thai Case Casts Spotlight on Business of Surrogacy, AP August 7th, 2014Contributing to Thailand's popularity as a surrogacy destination is the large number of impoverished women who will carry babies for a price, and the availability of doctors with good reproductive medical skills.|
|More Heart-Wrenching Chapters in the Baby Gammy Story, Biopolitical TimesAugust 7th, 2014Inadequate regulation of cross-border surrogacy has led to some truly awful stories, from coercion and exploitation of impoverished women, to children left stateless, to couples whose life savings have been embezzled by unscrupulous agencies. The unfolding story of Baby Gammy adds new dimensions to the complexities of contract pregnancies.|
|Loophole in Genetic Testing Law, WHAM TVMay 23rd, 2014People who undergo increasingly popular genetic testing could be penalized, forced to pay higher premiums or denied coverage for certain policies.|
|NIPS SPIN, The DNA ExchangeApril 21st, 2014Every few years a new screening technology comes zooming down the prenatal pike, sometimes arriving more quickly than we might like. The latest iteration – Non-Invasive Prenatal Screening – stands head and shoulders above the rest. |
|When Science Doesn't Have all the Answers, BloomMarch 6th, 2014My son’s rare genetic deletion is on the list of disorders identified by microarray analysis of a fetus’s DNA. It makes me sad to think that the lives of children like my son are being targeted for termination. Is this a step forward?|
|Is Genetic Testing Humans Playing God?, CNNFebruary 22nd, 2014Pre-implantation genetic diagnosis allows doctors to test embryos before they are implanted into a woman's womb, to help ensure that certain gene mutations are not passed on. But this procedure is raising myriad complex ethical and social issues.|
|Old Songs, New Tests, and Expensive ChildrenFebruary 20th, 2014The CEO of AOL justified a restructuring of the company’s 401(K) plan by citing two "distressed babies." This tone-deaf insensitivity was answered by a disapproving choir, but it sadly resembles too many descriptions of the "cost" of people with disabilities.
|To Catch a Killer Gene: Sisters Race to Stop Mystery Disease[Quotes CGS's Osagie K. Obasogie], NBC NewsFebruary 6th, 2014This story of a family banding together to stop a disease before it cuts a path through society illustrates the promise of genomic medicine, but also the soul-troubling questions that arise when people have a hand in their own evolution.|
|Too Much Information, MIT Technology ReviewDecember 17th, 2013Advances in non-invasive prenatal screening could collide with the politics of abortion and raise the ugly specter of eugenics. Are there limits to how much data parents should have—or want to have—about their children before birth?|
|Building Better Humans, East Bay ExpressDecember 4th, 2013A new documentary looks at the impacts of human enhancement technologies. "I totally get the temptation," says the filmmaker. "But what are we fixing? Who is the problem?"|
|Remembering Adrienne Asch, Biopolitical TimesNovember 21st, 2013We mourn the death and deeply appreciate the life of Adrienne Asch, bioethicist, scholar, and disability rights activist.
|Future Past: Disability, Eugenics, & Brave New Worlds, Biopolitical TimesNovember 7th, 2013A public symposium held on November 1 at San Francisco State University provided a rare and important opportunity to engage with the historical and ongoing implications of eugenic ideologies and practices for people with disabilities.
|Future Past: Disability, Eugenics, & Brave New WorldsNovember 7th, 2013The public symposium Future Past: Disability, Eugenics, & Brave New Worlds, held on November 1 at San Francisco State University, provided a rare and important opportunity to engage with the history and ongoing implications of eugenic ideologies and practices for people with disabilities.
|Disability Studies: A New Normal, The New York TimesNovember 1st, 2013Like black studies, women’s studies and other liberation-movement disciplines, disability studies teaches that it is an unaccepting society that needs normalizing, not the minority group. |
|The Damaging Language of “Cure” and Down Syndrome, PatheosOctober 2nd, 2013Once again we’re hearing news of a breakthrough in research on drug therapies to enhance the cognitive processing of people with Down syndrome. And once again, the discussions seem to fixate on the controversial notion of a “cure.”|
|[VIDEO] Debating Embryonic Genetic Testing[With CGS Advisory Board member Francine Coeytaux]The DoctorsOctober 1st, 2013New genetic tests, including Next Generation Sequencing, can radically improve the odds of a healthy, full term pregnancy … but where do we draw the line? Hear more from The Doctors.|
|Is Eugenics Ever Okay?, GenotopiaJuly 26th, 2013Recognizing that we are grasping the reins of human evolution as fast as we can raises two sets of concerns. First, “What if it doesn’t work?” Second, "What if it does?"|
|A Few Notes on the InvisibleJuly 23rd, 2013Thoughts about disability, invisibility, Ethan Saylor's death at the hands of private police, and news that the extra chromosome that causes Down syndrome may one day be “silenced.”|
|Made With Love, Biopolitical TimesJuly 22nd, 2013The first baby has been born following “next generation genetic sequencing” of IVF embryos. What are the implications?|
|Talking Biopolitics is Back!, Biopolitical TimesMay 13th, 2013A series of live web-based conversations with cutting-edge thinkers on the social meaning of human biotechnologies will be kicking off next week. RSVP now to join the conversations!
|Tough Calls on Prenatal Tests , Wall Street JournalApril 3rd, 2013New prenatal gene tests are reshaping care for expectant mothers, but their rapid rollout has raised fears that poorly understood results could lead to confusion among patients and doctors. |
|Surrogate Offered $10,000 to Abort Baby, CNNMarch 6th, 2013A surrogate refused to have an abortion after severe abnormalities were spotted on an ultrasound and moved to Michigan, where she became the legal mother.|
|Anatomy of a Webpage, Part 3: Selling “Peace of Mind”November 13th, 2012New developments in prenatal tests are triggering aggressive - and often misleading - marketing. Thankfully, there are signs of push-back from a society that is learning that people are more than their syndromes.
|Anatomy of a Webpage, Part 2: Preconception ServicesOctober 17th, 2012People living with genetic diseases become medicalized abstractions of risk and defect in the slick marketing of fetal gene tests. More than a matter of semantics, such simplification has negative consequences for all.|
|Anatomy of a Webpage: Marketing Fetal Gene Tests and Sequenom’s MaterniT21, Biopolitical Times guest contributorSeptember 24th, 2012In 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.
|The Dangers of Fetal Engineering , Biopolitical TimesAugust 17th, 2012A recent study considers the troubling off-label use of a risky drug in pregnant women whose baby girls may not be born with normal-looking genitals.
|Couples Use IVF to Pick Genes, The AgeJuly 3rd, 2012Fertile women with genes that predispose them to breast and ovarian cancers are using preimplantation genetic diagnosis to select embryos without the genes.|
|Designer Babies in Popular Culture, Biopolitical TimesJune 21st, 2012The Whitest Kids U’Know’s comedic parody of genetic counseling is reminiscent of a similar scene in GATTACA.
|NC Bill Supports Compensation for Eugenics Victims, New ObserverMay 16th, 2012Victims of North Carolina's decades-long forced sterilization program would receive $50,000 each under a bill filed Wednesday that would make the state the first to compensate people who lost their child-bearing abilities under the once-common practice.|
|Will Gattaca Come True?[Quotes CGS's Marcy Darnovsky], SlateApril 27th, 2012Noninvasive, early fetal tests for sex, paternity, and chromosomal conditions will change pregnancy dramatically — and raise tricky ethical questions.|
|Genetic Discrimination and Ron Paul, Biopolitical TimesJanuary 9th, 2012Genetic discrimination in Canada today is similar to what the US faced prior to the Genetic Information Nondiscrimination Act of 2008, opposed by presidential candidate Ron Paul.|
|The quest for the perfect baby, Haaretz [Israel]Should parents be able to sue doctors for failing to prevent the birth of a child with a defect? That is a question facing the [Israeli] Supreme Court, which has been asked to recognize 'wrongful birth.' |
|The Blade Runner's Personal Victory, Biopolitical TimesAugust 31st, 2011Oscar Pistorius, running on two prosthetic legs, reached the semifinals of the track and field World Championship 400m race, encouraging some potentially important discussions.|
|One Step Closer to Designer BabiesNew Noninvasive Prenatal Genetic Testing Could Change Human Pregnancy Forever, Science ProgressApril 22nd, 2011A new approach to testing the genes of early-stage fetuses could radically alter the experience of pregnancy and parenting from as early as five weeks, leading to a potentially dangerous moral quandary.|
|Eugenics lawmaker resigns, Concord MonitorMarch 15th, 2011State Rep. Martin Harty resigned yesterday, facing outrage from constituents, colleagues and strangers over comments he made endorsing eugenics for what he called "defective people."|
|Forced sterilization considered in a UK court
, Biopolitical TimesFebruary 17th, 2011A British special court delayed its ruling on whether or not a woman with “significant learning disabilities” should be forcibly sterilized.
|Is forced sterilization ever OK?[Interview with CGS's Doug Pet], SalonFebruary 16th, 2011A U.K. court considers the question in the case of a pregnant woman with significant learning disabilities.
|Paul S. Miller, Advocate for Disabled, Dies at 49, New York TimesOctober 20th, 2010In recent years, Mr. Miller focused on tensions between disability rights and genetic science. In a paper titled “Avoiding Genetic Genocide,” Mr. Miller criticized scientists for what he saw as their eagerness to use genetics to produce “perfect” humans.|
|Two New Publications from Generations Ahead, Biopolitical TimesDecember 22nd, 2009Reports from convenings on DNA forensics and communities of color, and on discussions among disability rights and reproductive rights and justice advocates.|
|The Prenatally and Postnatally Diagnosed Conditions Awareness Act [PDF]October 16th, 2008The Prenatally and Postnatally Diagnosed Conditions Awareness Act, co-sponsored by Senators Kennedy and Brownback and signed into law in October 2008, is a positive step toward providing better information and support to pregnant women and new mothers whose fetus or newborn is diagnosed with a disability. This information sheet highlights the Act’s benefits and identifies some of the issues to monitor in its implementation.|
|Conceiving the Future [PDF]Reproductive-justice activists on technology and policy, BitchJune 6th, 2008Emerging reproductive and genetic technologies have raised critical issues for social-justice movements. This roundtable discussion features some of the women who've been engaged in these national conversations.|
|Is it wrong to select a deaf embryo?, BBC NewsMarch 10th, 2008New fertility legislation will make it illegal to use embryos with a known genetic abnormality in IVF treatment when ones without the same defect are available.|
|Deaf demand right to designer deaf children, The Times (UK)December 23rd, 2007Deaf parents should be allowed to screen their embryos so they can pick a deaf child over one that has all its senses intact, according to the chief executive of the Royal National Institute for Deaf and Hard of Hearing People.|
|Prenatal Test Puts Down Syndrome in Hard Focus, New York TimesMay 10th, 2007. . . an unusual campaign being undertaken by parents of children with Down syndrome who worry about their future in the face of broader prenatal testing that could sharply reduce the number of those born with the genetic condition.|
|Quality-controlled embryos, Biopolitical TimesJanuary 22nd, 2007Last week's news about the "world's first embryo bank" brought much-needed attention to the accelerating marketization of baby-making. |
|Building Movements [PDF]Disability, Race, Gender, Sexuality and Genetic TechnologiesNovember 9th, 2006Presentation at the Conference on Representing Disability: Theory, Policy, Practice, Haverford College|
|The Future of Bioethics in a Divided DemocracyGenetic CrossroadsAugust 4th, 2006CGS Associate Director Marcy Darnovsky spoke about "Democratizing Biopolitics: Civil Society and the Future of Human Biotechnology" on a panel at the Future of Bioethics in a Divided Democracy conference held in Albany, NY on July 13 and 14.|
|UN debates abortion of disabled foetuses, ReutersFebruary 5th, 2005"U.N. diplomats drafting an international treaty on the rights of the disabled debated a possible ban on the abortion of foetuses with disabilities in an emotional negotiating session that ended on Friday."|
|Genetics: Deaf By Design, NatureOctober 20th, 2004"Employing genetic diagnosis to avoid having a baby with a disability is controversial enough. But a minority of deaf people would consider testing to ensure that they had a deaf child."|
|The New Eugenics, New York TimesJuly 4th, 2003One of the most profound and layered questions raised by recent genetic advances is this: Do we as a species still want babies born with genetic disabilities?|
|Disability Equality and Prenatal Testing: Contradictory or Compatible? [PDF], Florida State University Law ReviewNovember 30th, 2002"Is it possible for the same society to espouse the goals of including people with disabilities as fully equal and participating members and simultaneously promoting the use of embryo selection and selective abortion to prevent the births of those who would live with disabilities? As currently practiced and justified, prenatal testing and embryo selection cannot comfortably coexist with society’s professed goals of promoting inclusion and equality for people with disabilities. Nonetheless, revamped clinical practice and social policy could permit informed reproductive choice and respect for current and future people with disabilities."||