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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.



Why we need a law to prevent genetic discriminationby Yvonne Bombard, Ronald Cohn & Stephen SchererThe Globe and Mail [Canada]September 19th, 2016After unanimous passage through Canada's Senate, Bill S-201 on genetic data is now presented before the House of Commons.
DNA Dragnet: In Some Cities, Police Go From Stop-and-Frisk to Stop-and-Spitby Lauren KirchnerProPublicaSeptember 12th, 2016Private police databases expanding with DNA “voluntarily” collected from minors, without oversight or right to challenge.
Passing My Disability On to My Childrenby Sheila BlackNew York TimesSeptember 7th, 2016Drawing on personal experience, Sheila Black challenges the logic of creating "designer babies" with screening or modifying technologies.
Sperm Donor at Heart of Canadian Lawsuits Admits He Lied to Company Xytex, Police Sayby Diana MehtaThe Canadian PressAugust 30th, 2016Amidst pending lawsuits, Sperm Donor 9623 has turned himself in to the police for "falsifying paperwork."
These New Stem Cell Treatments Are Expensive — and Unprovenby Michael HiltzikLos Angeles TimesAugust 19th, 2016"Stem cells have become a medical buzzword," Paul Knoepfler notes. "I see a lot of businesses using direct marketing to patients to take advantage of that."
ExAC Project Pins Down Rare Gene VariantsNature EditorialAugust 17th, 2016A new study found only 9 of 192 variants were actually linked to pathogenic disease despite ongoing use in diagnosis and treatment.
Scientists break 13-year silence to insist 'three-parent baby' technique is safeby Ian JohnstonThe IndependentAugust 11th, 2016The researchers conclude the technique "can produce a viable pregnancy." But the pregnancy they established resulted in miscarriage.
The Human Genome Is Having Its Facebook Momentby Whet MoserChicago MagazineAugust 9th, 2016In less than a decade, as many people could have their genomes sequenced as use the social networking site (~1.7 billion monthly users).
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.
Why gene-therapy drugs are so expensiveby N.L.The EconomistAugust 3rd, 2016British pharmaceutical company GSK announced it will charge US$665,000 for a gene therapy for ADA-SCID (aka "bubble boy disease").
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