Disability Rights

Disability rights advocates have been among the earliest and most vocal critics of emerging human genetic and assisted reproductive technologies. They are acutely aware that technologies enabling the selection of “good” genes and “normal” traits can devalue the bodies and ultimately the lives of people with disabilities. These concerns are grounded in histories of discrimination and abuse, notably the twentieth-century state-sponsored sterilization projects in dozens of U.S. states, and the Nazi campaigns to exterminate hundreds of thousands of disabled people in German medical facilities and concentration camps. Today, disability rights advocates ask whether innovations such as embryo screening and gene editing for reproduction are likely to create a future that respects or devalues difference and disability as a part of the human condition.


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Disability rights advocates have been among the earliest and most vocal critics of human germline editing. Many thinkers and writers in this area highlight how a technology that enables the selection of “good” genes and “normal” traits can devalue the lives of people with disabilities.

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Rosemarie Garland-Thomson discusses disability as an identity and the conflicts raised by genetic testing and counseling on Laura Hercher’s podcast, The Beagle Has Landed.

Chapters:

3:00 “I didn’t understand myself as a disabled person because there was no identity...

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This article was cross-posted on Disability Remix, the blog of the Paul K. Longmore Institute on Disability at San...

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From next-generation prenatal tests, to virtual children, to the...

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Gene editing technology like CRISPR may have potential to treat diseases, but does editing future generations go too far? In this August 9, 2022 event, we heard renowned bioethicist Françoise Baylis, reproductive justice activist Nourbese Flint, and disability rights scholar and activist Karen Nakamura discuss the serious societal and ethical implications of human gene editing in the context of assisted reproductive technology. This discussion was moderated by Osagie Obasogie, professor of law and bioethics at UC Berkeley.

(For those who participated in the live event, the audio on this version has been fixed, and missing slides have been added.)

Published November 17, 2022

The prospect of using CRISPR gene editing in reproduction is often justified by claims that it will eliminate disease and disability. But these claims draw on societal narratives that devalue people with disabilities. In this roundtable conversation, Silvia Yee (Disability Rights Education and Defense Fund), Larkin Taylor-Parker (Autistic Self Advocacy Network), and Teresa Blankmeyer Burke (Gallaudet University) explore how new disability rights narratives can challenge uses of genetic and reproductive technologies based in ingrained ableism, and promote futures in which disabled people flourish. Rebecca Cokley (Ford Foundation) moderated the discussion.

Full transcript and additional information about the speakers and topic can be found on the CGS website: https://www.geneticsandsociety.org/in...

This event on November 14, 2022 was co-sponsored by Center for Genetics and Society and Disability Rights Education and Defense Fund.

Center for Genetics and Society: https://www.geneticsandsociety.org/

Disability Rights Education and Defense Fund: https://dredf.org/

Published March 2, 2023

This two-part online CGS event centers social justice and human rights, presenting voices and perspectives from feminist, disability rights, reproductive rights and justice, racial justice, environmental, and human rights movements and scholars, who question whether heritable genome editing has any place in a fair and inclusive future. Day 2 of the symposium includes two panels: "Missing voices speak out," featuring Larkin Taylor Parker, Abril Saldaña, Dana Perls, and Nourbese Flint, and moderated by Emily Galpern; and "Genetic justice beyond the summit," featuring Isabelle Bartram, Maria Ní Flatharta, Milton Reynolds, and Katie Hasson.

This two-part online CGS event centers social justice and human rights, presenting voices and perspectives from feminist, disability rights, reproductive rights and justice, racial justice, environmental, and human rights movements and scholars, who question whether heritable genome editing has any place in a fair and inclusive future. Part one took place on February 27, 2023 and features CGS Executive Director Marcy Darnovsky discussing history and context of the Summit process, followed by Dorothy Roberts, Rosemarie Garland-Thomson, George Annas and Silvia Yee (moderator) in conversation to discuss the social justice case against heritable genome editing.