Missing Voices Initiative



Despite repeated and explicit calls for broad societal inclusion, including from high-profile scientific bodies, meaningful engagement efforts related to heritable genome editing have not been supported or encouraged. Robust consideration of social and ethical concerns has not occurred, and existing prohibitions against heritable genome editing in 75 nations and an international treaty have been routinely downplayed.

To meet this challenge, the Center for Genetics and Society is launching the Missing Voices Initiative. This effort will bring together advocates and scholars in a process aimed at 1) amplifying social justice and human rights voices and perspectives leading up to and during the Third International Summit on Human Genome Editing in London, and 2) modeling meaningful inclusion of these key voices and perspectives in the debate about heritable genome editing. A small initial group will lay the foundation for a larger ongoing network post-Summit.

As part of the effort, CGS submitted a letter to the Summit organizing committee calling on them to genuinely and meaningfully include social justice concerns and civil society voices in Summit planning, presentations, and any concluding or summary statement. The letter noted the repeated claims of commitment to broad societal engagement and to social concerns, and asked specific questions about how Summit organizers will fulfill these pledges.


In this time of reckoning over eugenic abuses, the persistence of racism, and stark health inequities brought to light by a global pandemic, it has become clear that human rights and social justice concerns must be at the forefront of all policy discussions – especially those pertaining to powerful new technologies with effects on all humanity. There is still time to meaningfully include these essential but neglected voices and concerns in the upcoming Summit.
 


Missing Voices Initiative Working Group Members

 

   
George Annas, Boston, Massachusetts, US
Director of the Center for Health Law, Ethics & Human Rights at Boston University School of Public Health, Professor at School of Law and School of Medicine
Julia Bascom, Washington, DC, US
Executive Director at the Autistic Self Advocacy Network
Britta van Beers, Amsterdam, North Holland, Netherlands
Professor of law, ethics and biotechnology at the department of legal theory and legal history, Vrije Universiteit Amsterdam
Emily Beitiks, San Francisco, California, US
Associate Director, Longmore Institute on Disability, San Francisco State University and Adjunct Faculty, Menlo College
Alana Cattapan, Waterloo, Ontario, Canada
Canada Research Chair in the Politics of Reproduction and an Assistant Professor in the Department of Political Science at the University of Waterloo
Troy Duster, Berkeley, California, US
Professor emeritus, Sociology, UC Berkeley and New York University
Rosemarie Garland-Thomson, San Francisco, California, US
Professor emerita of English and bioethics at Emory University, CGS Fellow
Amrita Pande, Cape Town, Western Cape, South Africa
Associate Professor, Department of Sociology, University of Capetown
Dana Perls, Oakland, California, US
Food and technology program manager, Friends of the Earth
Milton Reynolds, San Leandro, California, US
Educator and activist in the SF Bay Area, Milton Reynolds Consulting, CGS Fellow
Dorothy Roberts, Philadelphia, Pennsylvania, US (advisory role)
Departments of Africana Studies and Sociology and the Law School at University of Pennsylvania, Penn Program on Race, Science & Society in the Center for Africana Studies
Katie Stoll, Olympia, Washington, US
Executive Director, Genetic Support Foundation
Krystal Tsosie, Diné (Navajo Nation), Colonial US
Ethics and Policy Director, Co-Founder, Native BioData Consortium
Sally Whelan, Boston, Massachusetts, US
Our Bodies Ourselves
Silvia Yee, Berkeley, California, US
Senior staff attorney at Disability Rights Education and Defense Fund (DREDF)
Joseph Yracheta, Cheyenne River Sioux Reservation, Eagle Butte, South Dakota, US
Executive Director, Native BioData Consortium