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About Disability & Human Biotechnology


Disability rights advocates have been among the earliest and most vocal critics of emerging genetic and reproductive technologies. Many people with disabilities are acutely aware that technologies enabling the selection of “good” genes and “normal” traits can devalue disabled people’s bodies and ultimately their lives.

This concern is informed by past and ongoing discrimination against people with disabilities that often includes brutal practices. For example, twentieth-century eugenicis­ts in the United States and some European countries sponsored programs that sterilized tens of thousands of disabled people. The Nazi genocide began with doctors and nurses exterminating over 100,000 disabled people in German medical facilities; tens of thousands more perished in concentration camps.

This historical context gives pause to disability rights advocates concerned about existing selection technologies that are increasingly being used to prevent the birth of children with particular traits, as well as future technologies that could be used to modify children’s genes.



The Perfect 46: A “Science Factual” Film about our Near Futureby Jessica CussinsBiopolitical TimesJuly 10th, 2014A new science fiction film called “a sort of prequel to Gattaca” highlights the rise and fall of a genetic startup that analyzes people’s genomes to assess their ability to produce disease-free children.
Should We Design Our Babies? [VIDEO] [With CGS's Marcy Darnovsky]The Aspen InstituteJuly 2nd, 2014At the Aspen Ideas Festival, Marcy Darnovsky and Nita A. Farahany discuss the possibility and implications of "designer babies."
Advancing the Disability Rights Perspective on Bioethics Issuesby Marcy DarnovskyBiopolitical TimesJune 26th, 2014Reproductive technologies were on the agenda of the first-ever Disability Rights Leadership Institute on Bioethics.
Community Concerns Regarding the Google-Autism Speaks Ten Thousand Genomes Program (AUT10K)ASANJune 12th, 2014In response to the recent announcement of the new Google-Autism Speaks collaboration to produce, expand and analyze the world’s largest private collection of DNA samples of autistic children and adults.
A Medical Student’s Call for Action Against Research Misconductby Eden AlmasudeThe Hastings CenterJune 3rd, 2014Is research misconduct and abuse the norm in the University of Minnesota’s Department of Psychiatry? A recent investigative report suggests that the answer may well be yes.
Loophole in Genetic Testing Lawby Rachel GlaserWHAM TVMay 23rd, 2014People who undergo increasingly popular genetic testing could be penalized, forced to pay higher premiums or denied coverage for certain policies.
On Dialogue: Disability Studies and Science & Technology Studiesby Laura MauldinSomatosphereMay 19th, 2014The intersection of disability studies with science and technology studies can illuminate how we understand, act upon, cope with, and expect others to cope with human bodies.
Advancing the Disability Rights Perspective on Bioethics Issuesby Diane ColemanNot Dead YetMay 2nd, 2014The first ever Disability Rights Leadership Institute on Bioethics drew more than 60 participants.
NIPS SPINby Robert RestaThe 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.
Genetic Inheritance: How Much do you Want to Know?by Stuart JeffriesThe GuardianApril 4th, 2014Scientist Sharon Moalem says we will soon be able to alter our children's lives with genetic manipulation – would you do it if you could?
A Disturbing Trend: Conscience Clauses Threaten Genetic Counselingby Alex SternHuffington PostApril 2nd, 2014Conscience clauses place genetic counselors in an untenable predicament: State laws and hospital directives are in conflict with professional ethics and best practices.
Adrienne Asch: A Career at the Intersection of Bioethics and Disability Studiesby Sara BergstresserVoices in BioethicsMarch 12th, 2014Recognizing Adrienne Asch's pioneering work: Remembrances by three people who knew her both professionally and personally.
When Science Doesn't Have all the Answersby Louise KinrossBloomMarch 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?
The Market For DNA Sequencing-Based Down Syndrome Tests Could Exceed $6 Billionby Matthew HerperForbesFebruary 28th, 2014A study shows that a new DNA-sequencing based blood test provides a dramatic improvement in accuracy at screening for Down syndrome and a second, deadly disorder.
Is Genetic Testing Humans Playing God?by Robert KlitzmanCNNFebruary 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 Childrenby George Estreich, Biopolitical Times guest contributorFebruary 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]by Tony DokoupilNBC 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.
Ethics Questions Arise as Genetic Testing of Embryos Increasesby Gina KolataThe New York TimesFebruary 3rd, 2014The procedure raises unsettling ethical questions that trouble advocates for the disabled and have left some doctors struggling with what they should tell their patients.
Can a Blind Person Be a Racist? [Excerpt]by Osagie ObasogieScientific AmericanJanuary 10th, 2014Racist attitudes are not rooted in the ability to actually "see" the color of someone’s skin.
Should Persons Affected by Mitochondrial Disorders Not be Brought Into Existence?by Professor Calum MacKellarBioNewsJanuary 6th, 2014What is being proposed is not a form of therapy in which a person is being treated or cured for a disorder. Instead, it is making sure that certain persons are not brought into existence.
An Ethics for the Future of Genetic Testingby Sara HendrenThe AtlanticDecember 30th, 2013As testing becomes more advanced, how should expecting parents weigh the information they have about a fetus with the information they don't?
Selling Tests, Selling Treatments: A Few Reflections on Medical Advertisingby George Estreich, Biopolitical Times guest contributorDecember 18th, 2013The questions raised by the recent New York Times article about aggressive selling of ADD drugs should also be posed to those marketing non-invasive prenatal gene tests.
Too Much Informationby Amanda SchafferMIT 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 Humansby Zaineb MohammedEast 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?"
Adrienne Asch, Bioethicist and Pioneer in Disability Studies, Dies at 67by Margalit FoxThe New York TimesNovember 23rd, 2013Adrienne Asch, an internationally known bioethicist who opposed the use of prenatal testing and abortion to select children free of disabilities, died on Nov. 19 at her home in Manhattan.
Remembering Adrienne Aschby Marcy DarnovskyBiopolitical 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 Worldsby Jessica CussinsBiopolitical 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.
Disability Studies: A New Normalby Cecilia Capuzzi SimonThe 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.
Are We Too Close to Making Gattaca a Reality?by Ferris JabrScientific AmericanOctober 28th, 2013An era of market-based eugenics would exterminate any lingering notions of meritocracy. But that could never happen this side of the silver screen, right?
New Tests, Same Old Bias and Misinformationby Rachel AdamsThe Huffington PostOctober 21st, 2013October is National Down Syndrome Awareness Month, so the timing of a lazy and poorly researched New York Times piece on prenatal screening was particularly unfortunate.
Company Seeks to Make Sperm Banks Saferby Carolyn Y. JohnsonThe Boston GlobeOctober 14th, 2013A new company will test a woman’s DNA and the genes of potential sperm donors to produce a personalized list that strikes out donors who may be a bad match for about 600 genetic childhood diseases.
My Disabled Body, My Choiceby Veronica FoaleABCOctober 2nd, 2013Being disabled is a challenge in itself without society imposing restrictions on our fertility.
The Damaging Language of “Cure” and Down Syndromeby Amy Julia BeckerPatheosOctober 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.
Studying How The Blind Perceive Race[Discusses the work of CGS's Osagie Obasogie]by Kat ChowNPRSeptember 29th, 2013Blinded by Sight: Seeing Race in the Eyes of the Blind hits shelves in November.
New Prenatal Tests Provide More Information, but Link to Problems Isn’t Clearby Lea WinermanWashington PostAugust 26th, 2013Microarray testing is now routinely offered to expectant parents when karyotyping fails to find a genetic cause for problems identified by ultrasound.
Righting a Wrong: NC to Pay Victims of Forced Sterilizationby Kimberly JohnsonAljazeera AmericaAugust 23rd, 2013Many states had eugenics programs; North Carolina will be the first to provide financial compensation.
Is Individuality the Savior of Eugenics?by Nathaniel ComfortScientific AmericanAugust 23rd, 2013Once defined as “the science of human improvement through better breeding,” eugenics has roared back into the headlines in recent weeks in both Mr. Hyde and Dr. Jekyll personae.
As Prenatal Testing For Down Syndrome Increases, So Do Concerns About Counselingby Katherine BindleyHuffington PostAugust 20th, 2013As noninvasive tests become the new norm in prenatal care, medical professionals and genetic counselors hope that women will get the guidance they need.
Could it be a 'Cure'? Breakthrough Prompts Down Syndrome Soul-Searchingby JoNel AlecciaNBC NewsAugust 11th, 2013Hailed as a “cure in a Petri dish,” the research that may help create new treatments for problems caused by Down syndrome also raises the prospect of eliminating the condition entirely.
Is Eugenics Ever Okay?by Nathaniel ComfortGenotopiaJuly 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 Invisibleby George Estreich, Biopolitical Times guest contributorJuly 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 Loveby Jessica CussinsBiopolitical TimesJuly 22nd, 2013The first baby has been born following “next generation genetic sequencing” of IVF embryos. What are the implications?
Researchers Turn Off Down’s Syndrome Genesby Beth MoleNatureJuly 17th, 2013Silencing extra chromosome in cell cultures could lead to new treatments for the disorder.
First Baby Born After Full Genetic Screening of Embryos by Linda GeddesNew ScientistJuly 8th, 2013"There is the potential for getting an unprecedented amount of information about an embryo before it's transferred to the womb. We need to be very careful that this isn't used for trivial, non-medical reasons."
The Rise of a New Eugenicsby Lloyd Lewis and Julie ReiskinDenver PostJuly 4th, 2013Non-invasive prenatal testing technology is dangerously ahead of society's understanding of people who have Down syndrome.
The Bleak New World of Prenatal Geneticsby Marcy Darnovsky and Alexandra Minna SternThe Wall Street JournalJune 12th, 2013Like so many other powerful technologies, fetal gene tests must be used with caution and care.
EEOC Files and Settles Its First GINA-based Employment Discrimination Lawsuitby Jennifer K. WagnerGenomics Law ReportMay 13th, 2013Although individuals have brought complaints against employers alleging violations, this is the first lawsuit initiated by the EEOC to enforce the Genetic Information Nondiscrimination Act.
Talking Biopolitics is Back!by Jessica CussinsBiopolitical 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!
Dad Aims to Change Views of Down Syndrome in New Bookby Jessica Ryen DoyleFox NewsMay 11th, 2013George Estreich's new book, The Shape of the Eye, aims to change the negative connotations associated with Down syndrome.
Prenatal DNA Sequencingby Antonio RegaladoMIT Technology ReviewApril 23rd, 2013Reading the DNA of fetuses is the next frontier of the genome revolution. Do you really want to know the genetic destiny of your unborn child?
Tough Calls on Prenatal Tests by Christopher WeaverWall 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 Babyby Elizabeth CohenCNNMarch 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.
Meet the New Eugenics, Same as the Old Eugenicsby Gina Maranto, Biopolitical Times guest contributorBiopolitical TimesMarch 4th, 2013According to a new wave of eugenic advocacy, “we” have a “moral obligation” to enhance future generations.
Selling the Story: Down Syndrome, Fetal Gene Testing, and The Today Showby George Estreich, Biopolitical Times guest contributorBiopolitical TimesFebruary 28th, 2013On The Today Show, a couple learns the results of a noninvasive prenatal test. Left unanswered are questions about the effects of new technologies, and how those technologies are sold.
A Call for International Prohibition of Forced Genital-Normalizing Surgery and Sterilizationby Jessica CussinsBiopolitical TimesFebruary 21st, 2013A new report from the United Nations Special Rapporteur on Torture focuses on human rights abuses in health-care settings, and bolsters LGBTQI activists in their fight against involuntary sterilizations and genital-normalizing surgeries.
Parents of Down's Syndrome Woman, 21, Can NOT Have her Sterilised, Rules Judge by Daniel MillerDaily MailFebruary 16th, 2013In a landmark ruling in London, the sterilization of a woman with Down's syndrome at her parents' request was ruled 'disproportionate' and in violation of her human rights.
New Study Finds Number of Multiple Births Affected by Congenital Anomalies has Doubled in the Last 30 YearsBJOG: An International Journal of Obstetrics and GynaecologyFebruary 6th, 2013The number of birth defects arising from multiple births has almost doubled since the 1980s, suggests a new study compiled over a 24-year period across 14 European countries.
Hilary Rose: The Problem with the Bioscience Industry – Videoby Hilary RoseThe GuardianJanuary 30th, 2013Hilary Rose, co-author of Genes, Cells and Brains, argues that we should treat the medical claims made for genetic research with suspicion.
Fetal Genome Screening Could Prove TragicScientific AmericanJanuary 18th, 2013Parents will soon be able to have their fetus' genes mapped. Without proper guidance, they might decide to end the pregnancy based on a misguided reading of the genetic tea leaves.
It's Legal For Some Insurers To Discriminate Based On Genesby David SchultzNPRJanuary 17th, 2013The Genetic Information Nondiscrimination Act has a loophole: It only applies to health insurance. It says nothing about life insurance, disability insurance or long-term-care insurance.
N.C. House will Consider Eugenics Payouts Againby Patrick GannonStar News OnlineDecember 13th, 2012The North Carolina House will again pursue legislation in 2013 to compensate residents sterilized decades ago by a state-sanctioned board.
Non-Invasive Prenatal Testing: Is This the Brave New World We Want?by Alexandra Minna SternThe Huffington PostDecember 11th, 2012Several companies have recently unveiled non-invasive prenatal tests for use among "high-risk" women, but the history of prenatal testing in America suggests that a path to routinization is all but assured.
Tesla, Eugenics And Rationalizing Dehumanizationby Alex KnappForbesNovember 19th, 2012Famed inventor Nikola Tesla was an ardent supporter of eugenics, predicting universally established eugenics by the year 2100.
Anatomy of a Webpage, Part 3: Selling “Peace of Mind”by George Estreich, Biopolitical Times guest contributorNovember 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.
The Eugenic Impulseby Nathaniel ComfortThe Chronicle of Higher EducationNovember 12th, 2012Medical geneticists are working on weeding out disease, but what counts as disease is murky and the slide from prevention to enhancement loses friction fast.
Inquiry Into Practice of Sterilising Disabled Womenby Tom NightingaleABC News (Australia)November 1st, 2012A Senate committee is looking into the controversial practice of sterilising disabled people, which is still legal in Australia.
Colman Chadam, California Boy, Ordered To Transfer Schools For Carrying Cystic Fibrosis Gene Huffington PostOctober 18th, 2012An 11-year-old has been ordered to leave his current school because of his genetic makeup. His parents are taking the issue to court.
Anatomy of a Webpage, Part 2: Preconception Servicesby George Estreich, Biopolitical Times guest contributorOctober 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.
Neural Stem Cells Successfully Implanted into the Brains of Four Boysby Jon BardinLos Angeles TimesOctober 12th, 2012Scientists have performed the first successful neural stem cell transplant into the brains of four boys with Pelizaeus-Merzbacher disease.
We are More Than the Sum of our Genesby Stella YoungRamp UpOctober 9th, 2012As a disabled feminist, I'm often asked about my views on medical procedures like pre-natal screening and preimplantation genetic diagnosis.
Prenatal Test Presents Dilemmas to Expectant Mothersby Maureen SalamonUS NewsSeptember 28th, 2012Some women label information about fetal chromosomal abnormalities "toxic knowledge" they wish they hadn't received, a small new study shows.
Complete Video Now Online for Eugenics in California: A Legacy of the Past?by Center for Genetics and SocietyBiopolitical TimesSeptember 28th, 2012A video recording of a public event at Berkeley School of Law about the legacies of eugenics in California.
Anatomy of a Webpage: Marketing Fetal Gene Tests and Sequenom’s MaterniT21by George EstreichBiopolitical 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.
Ich Bin ein Scroungerby Judith LevineSeven DaysSeptember 21st, 2012Every one of us is, or will be, disabled in some way. Must we all be Paralympians?
Bioethicist Pushes Us Toward Our Eugenic Dutyby Anna Hamilton, Biopolitical Times Guest ContributorSeptember 6th, 2012A professor of ethics takes his campaign for "breeding better babies" to the Reader's Digest.
Health Ministry to Expand Pregnant Women's Genetic Testing Subsidies by Yaron KelnerYNet NewsAugust 31st, 2012A new initiative in Israel will subsidize advanced genetic testing for pregnant women, providing prenatal diagnosis of genetic abnormalities.
Will Joseph Merrick, aka the Elephant Man, Ever Rest in Peace?by Emily BeitiksBiopolitical TimesAugust 22nd, 2012Scientists plan to extract DNA from the skeleton of Joseph Merrick in hopes that they can finally explain the cause of his disfigurement. What are the ethical implications?
The Dangers of Fetal Engineering by Emily BeitiksBiopolitical 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.
Eugenics in California: A Legacy of the Past?by Center for Genetics and SocietyBiopolitical TimesAugust 15th, 2012A free public event at UC Berkeley will consider the long history of eugenics in California and explore continuities and discontinuities in the uses and misuses of genetic ideas and practices.
As Prices for Prenatal Genome Sequencing Tests Fall, Researchers Worry About Consequences for Families in a Real-Life 'Gattaca' by Makini BriceMedical DailyAugust 13th, 2012Genome sequencing of fetuses would drastically increase the volume and scope of prenatal data, but its meaning would be unclear.
Clinical Trial Is Favorable for a Prenatal Gene Testby Andrew PollackThe New York TimesAugust 8th, 2012A new method of prenatal testing that can detect more genetic problems in a fetus than ever before could be headed toward wider use after encouraging results from a clinical trial.
Rolling the Dice of a Genetic Legacyby Ellen Painter DollarThe New York TimesJuly 20th, 2012A mother with brittle bone disease chooses to accept that risk for her children.
One of Five Million: Contemplating Fertility Treatment and Embryo Selectionby Jessica CussinsBiopolitical TimesJuly 12th, 2012Five million people have been born using in vitro fertilization. Though the technology has become safer and less expensive, it warrants attention because of the open door it provides for embryo selection.
Couples Use IVF to Pick Genesby Julia MedewThe 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.
North Carolina Survivors of Eugenic Sterilization are Passed Over Againby Jessica CussinsBiopolitical TimesJune 28th, 2012The North Carolina Senate has turned down compensation for living victims of the state-sponsored forced sterilization program that continued into the 1970s.
Designer Babies in Popular Cultureby Jessica CussinsBiopolitical TimesJune 21st, 2012The Whitest Kids U’Know’s comedic parody of genetic counseling is reminiscent of a similar scene in GATTACA.
Payments for Victims of Eugenics Are Shelvedby Kim SeversonThe New York TimesJune 20th, 2012North Carolina’s effort to compensate people who were sterilized under a widespread eugenics program that stretched into the 1970s all but died in the State Senate on Wednesday.
When California Decided Who Could Have Children and Who Could Notby Jeremy RosenbergLos Angeles TimesJune 18th, 2012California's "Asexualization Act" of 1909 gave the go-ahead for the state to sterilize more than 20,000 men and women against their will.
Genetic Testing For Color Vision Makes Commercial Debut for Military Applicationsby Dan BucklandmedGadgetJune 12th, 2012Possibly heralding a new era in the use of genetic testing for hiring decisions, Genevolve recently announced a new “military grade” test for inherited color blindness.
Genetic Screening of Unborn Babies 'May be Inaccurate'by Nick CollinsThe Telegraph (UK)June 7th, 2012The blood test that may be used to routinely screen foetuses for more than 3,000 genetic conditions raises "many ethical questions" and is not a clear indicator of how severe a disability may be.
N.C. House Approves Measure Compensating Victims of Eugenics Programsby Lynn BonnerNews ObserverJune 5th, 2012In a 86-31 vote, the state House approved a measure that will compensate people sterilized by a state authority over four decades ago.
NC Bill Supports Compensation for Eugenics Victimsby Martha WagoonerNew 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.
The Real Chen Guangcheng Story: Forced Abortion, Eugenics, and the One-Child Policyby Daniel SharpBiopolitical TimesMay 16th, 2012Amidst focus on the domestic and international political aspects of the Chen Guangcheng affair, the media have missed the real issue: forced abortion and forced sterilization in China.
Will Gattaca Come True?[Quotes CGS's Marcy Darnovsky]by Mara HvistendahlSlateApril 27th, 2012Noninvasive, early fetal tests for sex, paternity, and chromosomal conditions will change pregnancy dramatically — and raise tricky ethical questions.
$10.3 Million for Eugenics Compensation by Herbert L. WhiteCharlotte PostApril 25th, 2012North Caroliona Governor Bev Perdue’s proposed budget will include $10.3 million for people involuntarily sterilized by the state.
North Carolina Leads the Way in Compensation for Eugenic Sterilization Victimsby Emily BeitiksBiopolitical TimesMarch 22nd, 2012Will North Carolina’s efforts to compensate victims of eugenic sterilization encourage other states to follow suit?
California's Dark Legacy of Forced Sterilizationsby Elizabeth Cohen and John BonifieldCNNMarch 15th, 2012North Carolina's recent confrontation with its eugenic history raises the question: Will California move to confront its own eugenic history?
New Thriller about Eugenics, “the Dirty Little Secret of the Anglo-American Intellectual Elite”by Marcy DarnovskyBiopolitical TimesMarch 15th, 2012How should we understand the attraction of eugenics for liberals and leftists in the early twentieth century?
Sterilized by North Carolina, She Felt Raped Once Moreby David ZucchinoLos Angeles TimesJanuary 25th, 2012North Carolina's recent move to compensate victims of sterilization program isn't enough to resolve the pain of the troubled past.
Payment Set for Those Sterilized in Programby Kim SeversonNew York TimesJanuary 11th, 2012The task force assigned the difficult task of deciding how much to compensate the victims of a North Carolina sterilization program settled on a number on Tuesday.
Genetic Discrimination and Ron Paulby Emily BeitiksBiopolitical 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.
Stem Cell Fraud: A 60 Minutes Investigationby Scott Pelley60 MinutesJanuary 8th, 2012The Internet is full of websites selling unproven stem cell treatments for incurable illnesses. Correspondent Scott Pelley investigates.
Unnatural Selection: Is Evolving Reproductive Technology Ushering in a New Age of Eugenics? [Quotes CGS's Marcy Darnovsky]by Carolyn AbrahamThe Globe and MailJanuary 7th, 2012Modern day assisted reproduction offers a whole new approach to baby-making, one that gives people an unprecedented power to preview, and pick, the genetic traits of their children.
Health Insurance and ‘Genetic Discrimination’: Are Rules Needed? by Carly WeeksThe Globe and MailJanuary 1st, 2012Medical advances mean we can now test for some disease markers – but experts fear this progress will result in insurers and employers using genetic information to deny coverage and benefits.
Thousands Sterilized, a State Weighs Restitutionby Kim SeversonNew York TimesDecember 9th, 2011A task force is calculating North Carolina's obligation to the estimated 7600 victims of its eugenics program from 1933 to 1977, but the issues go deeper than just a dollar amount.
Francis Galton's Novel about Eugenicsby Michael MarshallNew ScientistDecember 5th, 2011The unpublished novel of eugenicist Francis Galton has been published in fragments by the University College London on the 100th anniversary of his death.
Genetic Testing for Down Syndrome: What It Can and Cannot Tell You by Emily BeitiksBiopolitical TimesNovember 10th, 2011Sequenom's new genetic test predicts the presence of Down syndrome at an earlier stage in pregnancy, but parents need more information to accompany the diagnosis.
Sex Selection Game-Changer? New Fetal Gene Test Reveals Sex at 7 Weeksby Doug PetBiopolitical TimesNovember 9th, 2011New non-invasive prenatal testing will enable parents to know a fetus's sex, Down's status, and possibly other traits dramatically earlier in a pregnancy.
Prenatal Blood Test for Down Syndrome Availableby Shari RoanLos Angeles TimesOctober 19th, 2011Women can now choose a non-invasive method of prenatal testing for Down syndrome.
The quest for the perfect babyby Meir BrezisHaaretz [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 Victoryby Pete ShanksBiopolitical 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.
More S'poreans Going Abroad for IVF to Choose Baby's GenderAsia OneAugust 22nd, 2011More and more Singaporeans are heading overseas for medical procedures which allow them to choose their babies' gender.
If You Really, Really Wanted a Girl...by Pam BelluckNew York TimesAugust 20th, 2011Tests using DNA to determine a fetus’s sex were shown to be remarkably accurate, but the tests also raise ethical questions: whether couples will abort fetuses of an unwanted sex.
Council for Responsible Genetics Explores New Fetal Gene Test Methodby Emily BeitiksBiopolitical TimesJuly 6th, 2011A recent report by the Council for Responsible Genetics assesses non-invasive prenatal genetic diagnosis and emerging ethical questions.
Could prenatal DNA testing open Pandora's box?[Quotes CGS's Marcy Darnovsky]by Malcolm RitterThe Associated PressJune 12th, 2011Some ethics experts say it's time to start talking now about what early-pregnancy fetal gene tests could mean for parents and society.
Comfort or conflict: Earlier Down syndrome testby Malcolm RitterSan Francisco ChronicleJune 11th, 2011Companies are racing to market a blood test that could detect Down syndrome very early in pregnancy.
Annals of Human Genetics Does A Little “House Cleaning.” Sort Of.by Osagie ObasogieBiopolitical TimesMay 19th, 2011In a former incarnation, a well-respected scholarly journal promoted eugenics. It has now put its archives online.
Exoskeleton Helps UCB Student Walk for Graduation: Disability Justice or Cyborg Fantasy?by Emily BeitiksBiopolitical TimesMay 18th, 2011A new invention for paraplegics allows a UCB grad to walk to accept his diploma, but the device comes with disability clichés and transhumanist potential.
One Step Closer to Designer BabiesNew Noninvasive Prenatal Genetic Testing Could Change Human Pregnancy Foreverby Marcy DarnovskyScience 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.
Pre-pregnancy genetic screening backed by government advisers[United Kingdom]by James MeikleThe Guardian (UK)April 6th, 2011Tests will allow couples or individuals to assess their own risk of carrying genetic conditions such as cystic fibrosis.
Eugenics lawmaker resignsby Shira SchoenbergConcord 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."
Babies with THREE parents and free of genetic disease could soon be born using controversial IVF technique[United Kingdom]by David DerbyshireThe Daily MailMarch 12th, 2011But the new IVF technique raises questions and concerns.
Forced sterilization considered in a UK court by Doug PetBiopolitical 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]by Tracy Clark-FlorySalonFebruary 16th, 2011A U.K. court considers the question in the case of a pregnant woman with significant learning disabilities.
On the scales: Social justice and pluralism in reproductive tourismby Gina Maranto, Biopolitical Times guest contributorFebruary 1st, 2011Bioprospecting for eggs or colonizing wombs are not morally equivalent to bargain hunting or bypassing prejudice about who may become parents.
When America believed in eugenicsby Victoria BrignellNewStatesmanDecember 10th, 2010Victoria Brignell investigates America's past enthusiasm for eugenics and the profound suffering this inflicted on people with disabilities.
Paul S. Miller, Advocate for Disabled, Dies at 49by Dennis HevesiNew 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.
Nobel Prize reflects IVF's acceptance as medical procedure[Quotes CGS's Marcy Darnovsky]by Kevin B. O'Reillyamednews.comOctober 18th, 2010Nobel laureate Robert G. Edwards' innovation has resulted in more than 4 million children born since 1978.
Couple urged surrogate to abort fetus due to defectby Tom BlackwellNational PostOctober 6th, 2010Questions are being raised about whether government oversight of contracts between mothers and “commissioning” parents is needed.
Two New Publications from Generations Aheadby Marcy DarnovskyBiopolitical TimesDecember 22nd, 2009Reports from convenings on DNA forensics and communities of color, and on discussions among disability rights and reproductive rights and justice advocates.
Ted Kennedy: Pro-choice and pro-disability rightsby Marcy DarnovskyBiopolitical TimesSeptember 3rd, 2009As Senator Kennedy knew, there is no contradiction between being deeply pro-choice and deeply pro-disability rights.
The Human Fertilisation and Embryology Bill 2008A Commentaryby David KingApril 15th, 2009The director of Human Genetics Alert offers an analysis of the UK's new law governing human genetic and reproductive technologies.
New Safety, New Concerns In Tests for Down Syndromeby Rob SteinWashington PostFebruary 24th, 2009"We have a history in this country of a eugenics movement where people tried to eliminate certain people from the gene pool. People could start wondering, 'How did you get born?'"
Sarah Palin, Down syndrome, and the abortion debateby Marcy DarnovskyBiopolitical TimesNovember 7th, 2008Two commentaries explain how we can – and should – take prenatal genetic selection out of the abortion debate.
New US Law Supports Parents of Children with Disabilitiesby Jenna BurtonBiopolitical TimesOctober 21st, 2008A bipartisan bill will provide comprehensive information and support to pregnant women and new mothers whose fetus or newborn is diagnosed with a disability.
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.
Experts Fear Potential Abuses of Genetic Screening[Quotes CGS's Marcy Darnovsky]by Beth WhitehouseNewsdayJuly 18th, 2008Will parents use embryo selection technology to select a child's characteristics the way you can pick the options on a car?
Conceiving the Future [PDF]Reproductive-justice activists on technology and policyby Andi Zeisler and Emily GalpernBitchJune 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.
Couples Could Win Right to Select Deaf Babyby Richard GrayTelegraphApril 14th, 2008Deaf couples could be allowed to use embryo-screening technology and choose to have a deaf child, after an amendment to a controversial bill to overhaul the UK's oversight of ARTs.
Is it wrong to select a deaf embryo?by Clare MurphyBBC 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 childrenby Sarah-Kate TempletonThe 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.
Vatican talks of 'eugenics culture’ after abortion of wrong twinby Richard OwenTimes Online [UK]August 29th, 2007Italian prosecutors have opened an investigation into a botched selective abortion that the Vatican has described as the result of a “culture of perfection” resembling Nazi eugenics.
Disability Rights Advocates Recall US Eugenics in Washington Post Op-Edby Marcy DarnovskyBiopolitical TimesMay 23rd, 2007Check out this 80th anniversary remembrance of the infamous ruling that upheld Virginia's involuntary sterilization laws.
Prenatal Test Puts Down Syndrome in Hard Focusby Amy HarmonNew 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 embryosby Marcy DarnovskyBiopolitical TimesJanuary 22nd, 2007Last week's news about the "world's first embryo bank" brought much-needed attention to the accelerating marketization of baby-making.
Wanting Babies Like Themselves, Some Parents Choose Genetic Defectsby Darshak M. Sanghavi, M.D.New York TimesDecember 5th, 2006"A coming article in the journal Fertility and Sterility offers a fascinating glimpse into how far some parents may go to ensure that their children stay in their world — by intentionally choosing malfunctioning genes that produce disabilities"
Building Movements [PDF]Disability, Race, Gender, Sexuality and Genetic Technologiesby Sujatha JesudasonNovember 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.
Program on Gender, Justice, and Human Genetics [PDF]July 13th, 2006A one-page overview of CGS's Program on Gender, Justice, and Human Genetics.
New Forms of Sex Selection [PDF]June 13th, 2006A one-page overview of sex selection.
Opinion: ADA and the new eugenicsby Andrew J. Imparato and Anne C. SommersWashington ExaminerAugust 10th, 2005Andrew Imparato and Anne Sommers warn against a rising new eugenics, rooted in genetic and reproductive technologies.
UN debates abortion of disabled foetusesby Irwin ArieffReutersFebruary 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."
Disability Community and Identity: Perceptions of Prenatal Screeningby Deborah Kaplan and Marsha SaxtonExcerpt from Our Bodies Ourselves (2005 edition)This article explores the social origins of disability discrimination and its implications for prenatal diagnosis, and examines some of the objections to screening expressed by people with disabilities.
Embryo screening 'devalues' disabled (New Zealand)by Rebecca PalmerStuff NZNovember 25th, 2004"Screening human embryos for serious genetic conditions could 'devalue' disabled children, the Office of the Children's Commissioner says."
Genetics: Deaf By Designby Carina DennisNatureOctober 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 Eugenicsby Nicholas D. KristofNew 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]by Adrienne AschFlorida 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."
Disabled Peoples International Statement on Human GeneticsGenetic CrossroadsJanuary 7th, 2001The European contingent of Disabled Peoples International (DPI Europe) released a position statement in November on the new human genetics.
Disability Rights Critique of Prenatal Genetic TestingGenetic CrossroadsSeptember 19th, 2000A 22-page report titled "The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations," has been published by the Hastings Center.
Japanese cloning researchers break the rulesGenetic CrossroadsNovember 21st, 1999
The Disability Rights Critique of Prenatal Genetic Testing [PDF]Reflections and Recommendationsby Erik Parens and Adrienne AschHastings Center Report

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