Forging New Disability Rights Narratives about Heritable Genome Editing

Monday, November 14, 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.

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

A full transcript of the discussion is available.

Speaker Bios

Silvia Yee is a senior staff attorney at Disability Rights Education and Defense Fund (DREDF) where her work has included projects to increase physical and programmatic accessibility and disability awareness in the delivery of health care services, as well as impact litigation to increase access for people with disabilities in myriad aspects of public and private life. Silvia maintains interests in health care reform, international disability rights, and models of equality. Prior to joining DREDF, she worked in private commercial practice in Canada, and with the Health Law Institute at the University of Alberta, where she published on the topics of Canadian Health Care Standards and the extent of the nursing profession’s legal authority. Silvia received her B.M., M.A., and L.L.B. degrees from the University of Alberta.  Following graduation from law school, she clerked with Justice William Stevenson at the Alberta Court of Appeal.

R. Larkin Taylor-Parker is the Legal Director of the Autistic Self-Advocacy Network and an openly autistic attorney licensed in North Carolina. Larkin earned a B.A. in history at Agnes Scott College in Decatur, Georgia in 2014. They focused on the history of mental health and developmental disability and institutionalization during their undergraduate studies and engaged in extracurricular speaking, writing, and organizing on autism and neurodiversity issues. They then attended the University of Georgia School of Law, becoming an Autistic Scholars Fellow in 2016 and graduating with a J.D. in 2017. Before joining ASAN, Larkin worked at the North Carolina Protection and Advocacy System. Larkin’s professional interests include promoting the autonomy of disabled people, alternatives to guardianship, equal access to society under the ADA, health equity for all people with disabilities, and ensuring that efforts to enhance disability rights and disability justice serve multiply-marginalized people.

Teresa Blankmeyer Burke is Professor of Philosophy and Director of the School and Arts and Humanities at Gallaudet University. She received her bachelor’s degree from Mills College, and her master’s and doctoral degrees from the University of New Mexico. She is the first signing Deaf woman in the world to receive a Ph.D. in philosophy, having accessed her graduate education through American Sign Language (ASL) interpreters. Her research interests include bioethics, philosophy of disability, and deaf philosophy — the space where philosophy intersects with Deaf studies. (The use of uppercase Deaf designates the cultural community of signed language users; lower case deaf designates audiological status). She is Editor of The Journal of Philosophy of Disability, along with Joel Michael Reynolds.

Rebecca Cokley is the program officer for the Ford Foundation's first-ever U.S. Disability Rights program, which is focused on strengthening the field, building a pipeline of diverse leadership, promoting disability pride, and mobilizing resources toward disability rights work. Prior to joining Ford, Rebecca was the cofounder and director of the Disability Justice initiative at the Center for American Progress and executive director for the National Council on Disability. A three-time presidential appointee, Rebecca served in key policy roles at the Department of Education and the Department of Health and Human Services, as well as oversaw diversity and inclusion efforts for the Obama administration. Rebecca is a frequent speaker and contributor on issues of public policy and disability inclusion in the media and at major national conferences.

Resources

Rebecca Cokley, Please don't edit me out, The Washington Post

Jackie Leach Scully and Teresa Blankmeyer Burke, Russia's CRISPR "Deaf Babies": The Next Genome Editing Frontier?, Impact Ethics

Teresa Blankmeyer Burke, Hearsplaining

Sandy Sufian and Rosemarie Garland-Thomson, The Dark Side of CRISPR, Scientific American

Alice Wong, Resisting Ableism: Disabled People and Human Gene Editing, Medicine X at Stanford (video)

Emily Beitiks, 5 Reasons Why We Need People with Disabilities in the CRISPR Debates, Biopolitical Times