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

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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

Boston, Massachusetts, United States

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Executive Director, Autistic Self Advocacy Network

Washington, D.C., United States

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Professor of law, ethics and biotechnology, department of legal theory and legal history, Vrije Universiteit Amsterdam

Amsterdam, North Holland, Netherlands
 

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Associate Director, Longmore Institute on Disability, San Francisco State University and Adjunct Faculty, Menlo College

San Francisco, California, United States

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Canada Research Chair in the Politics of Reproduction and an Assistant Professor in the Department of Political Science, University of Waterloo

Waterloo, Ontario, Canada

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Teacher, activist, and organizer working at the intersection of climate, race, colonization and justice; co-founder of Movement Generation: Justice and Ecology Project

Oakland, California, United States

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Professor emeritus, Sociology, UC Berkeley and New York University

Berkeley, California, United States

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Professor emerita of English and bioethics, Emory University, CGS Fellow

San Francisco, California, United States
 

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Associate Professor, Department of Sociology, University of Cape Town

Cape Town, Western Cape, South Africa

 

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Food and technology program manager, Friends of the Earth

Oakland, California, United States

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Educator and activist in the SF Bay Area, Milton Reynolds Consulting, CGS Fellow

San Leandro, California, United States

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George A. Weiss University Professor of Law and Sociology and the Raymond Pace and Sadie Tanner Mossell Alexander Professor of Civil Rights, 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

Philadelphia, Pennsylvania, United States (advisory role)

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Executive Director, Genetic Support Foundation

Olympia, Washington, United States

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Legal Director, ASAN (Autistic Self Advocacy Network)

Raleigh, North Carolina, United States

 

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Ethics and Policy Director, Co-Founder, Native BioData Consortium

Diné (Navajo Nation), Colonial United States

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Co-founder, Our Bodies Ourselves

Boston, Massachusetts, United States

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Senior staff attorney, Disability Rights Education and Defense Fund (DREDF)

Berkeley, California, United States

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Executive Director, Native BioData Consortium

Cheyenne River Sioux Reservation, Eagle Butte, South Dakota, United States