Equity, Sovereignty, and Racial Justice: Beyond Access in Debates on Human Genome Editing

How should we talk about equity in the context of human genome editing?

While sky-high costs and lack of access to potential somatic gene therapies are important to address, we also need to ask critical questions about health equity, sovereignty, and racial justice––particularly in relation to heritable genome editing, which would alter the genes and traits of future generations.

In this roundtable discussion, held on September 14, 2022, Indigenous geneticist-bioethicist Krystal Tsosie, reproductive justice scholar and advocate Dorothy Roberts, and educator and activist Milton Reynolds addressed the legacies of eugenics, honoring Indigenous sovereignty, decolonizing DNA, and why conversations about heritable genome editing urgently need voices and perspectives grounded in social justice and human rights. Read a recap of the event.

The discussion was moderated by CGS associate director Katie Hasson. ASL interpretation and captions are available in the recording. You can download the full transcript here (available soon).

 

Speaker Bios:

Krystal S. Tsosie, PhD, MPH, MA

Presidential Postdoctoral Fellow (Assistant Professor 01/2023), Arizona State University, School of Life Science, Tempe, AZ;

Co-Founder, Ethics and Policy Director, Native BioData Consortium, Eagle Butte, SD

Krystal Tsosie (Diné/Navajo Nation), PhD, MPH, MA is an Indigenous geneticist-bioethicist at Arizona State University in the School of Life Sciences. As an advocate for Indigenous genomic data sovereignty, she co-founded the first US Indigenous-led biobank, a 501c3 nonprofit research institution called the Native BioData Consortium. Her research centers on ethical engagement with Indigenous communities in precision health and genomic medicine. She also incorporates biostatistics, genetic epidemiology, public health, and, increasingly, environmental data science and stewardship. She also serves as the 2022‐2023 Global Chair of ENRICH: Equity for Indigenous Research and Innovation, which focuses on enhancing Indigenous rights to develop, control, and govern Indigenous data and supports participation in STEM and in digitally‐enabled futures. She currently serves on the Government Policy and Advocacy Committee for the American Society of Human Genetics and the National Academy of Medicine Committee on Emerging Science, Technology, and Innovation. Krystal’s research has received international media attention in outlets such as The New York Times, PBS NOVA, Washington Post, NPR, The Atlantic, and Forbes, among others.

 

Dorothy E. Roberts, JD

George A. Weiss University Professor; Raymond Pace and Sadie Tanner Mossell Alexander Professor of Civil Rights;

Professor, Departments of Africana Studies and Sociology and Penn Law, University of Pennsylvania

Dorothy E. Roberts, JD, is George A. Weiss University Professor; Raymond Pace and Sadie Tanner Mossell Alexander Professor of Civil Rights; and Professor, Departments of Africana Studies and Sociology and Penn Law, University of Pennsylvania. An internationally recognized scholar, public intellectual, and social justice advocate, she has written and lectured extensively on the interplay of gender, race, and class in legal issues and has been a leader in transforming public thinking and policy on reproductive health, child welfare, and bioethics. She is the author of several acclaimed books, including Fatal Invention: How Science, Politics, and Big Business Re-create Race in the Twenty-first Century (2012). Her most recent book is Torn Apart: How the Child Welfare System Destroys Black Families--and How Abolition Can Build a Safer World (2022). She serves on the boards of the Black Women’s Health Imperative, the National Coalition for Child Protection Reform, and the Center for Genetics and Society, as well as on the Standards Working Group of the California Institute of Regenerative Medicine.

 

Milton Reynolds

Milton Reynolds is a San Francisco Bay Area based career educator, author, equity and inclusion consultant and activist. His activism has been devoted to disrupting systems of racial injustice with a focus on juvenile justice reform, law enforcement accountability, environmental justice, youth development, educational transformation and disability justice. His efforts are devoted to creating a more just world in which all people are valued and treated with dignity. Milton’s publications include a chapter in Seeing Race Again: Countering Colorblindness across the Disciplines, Handbook of Social Justice in Education, and one in the recently released Leading in the Belly of the Beast. He serves on the boards of the California Council for the Social Studies and the Paul K. Longmore Institute on Disability at San Francisco State University.