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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.



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.
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