génome humain

En novembre 2015, l’organisation américaine « Center for Genetics and Society » * a publié une lettre ouverte cosignée par plus de 175 chercheurs, scientifiques, professionnels de la santé, défenseurs de l’intérêt public, qui demandent le renforcement de l’interdiction de l’utilisation des techniques de modification génétiques sur les gamètes et les embryons humains.

Les signataires de cette lettre représentent un large éventail de professions, ainsi que diverses opinions sur les nombreuses questions touchant à l’utilisation des techniques de modification du génome.

Cette lettre pointe du doigt le consensus sur l’alerte relayée par toutes ces personnalités « Nous sommes tous d’accord sur l’une des applications potentielles : nous ne devons pas modifier les gènes que nous transmettrions à nos descendants ».

La lettre ouverte rappelle que « La mise en œuvre de la modification génétique transmissible – souvent désignée comme la création d’« humains génétiquement modifiés » ou « bébés à la carte » – pourrait modifier de manière irrévocable la nature de l’espèce humaine et la société. Elle précise : « Les expériences d’intervention sur la lignée germinale humaine pourraient conduire à des fausses couches, des conséquences néfastes pour la mère, ou encore des enfants mort-nés. Génétiquement modifiés, les enfants qui semblent en bonne santé à la naissance pourraient développer des problèmes graves plus tard dans leur vie, peut-être même  des problèmes introduits par ce qui était des améliorations présumées. D’autres conséquences néfastes de la modification des lignées germinales pourraient n’apparaître qu’aux générations suivantes. Ces résultats représenteraient des tragédies individuelles ».

Cette lettre ouverte vient aussi poser un contrepoint à cet argument récurrent : « Certains suggèrent que la modification germinale pourrait n’être autorisée qu’à des fins thérapeutiques, mais pas pour « l’augmentation».

En effet, la lettre précise : « Mais la distinction entre ces applications est subjective et il serait difficile, voire impossible, de mettre en œuvre une telle règle. Une intervention sur la lignée germinale ouvrirait la porte à une ère de consommation d’un « eugénisme haute technologie » par des parents aisés qui cherchent à choisir les qualités socialement préférées pour leurs enfants. A une époque où l’inégalité économique est en pleine progression dans le monde entier, la modification génétique héréditaire pourrait inscrire de nouvelles formes d’inégalité et de discrimination sur le génome humain. »

Par cette lettre ouverte, le Center for Genetics and Society rappelle que ces modifications sont interdites par la convention d’Oviedo.

Les signataires se disent préoccupés par le fait que l’accent soit largement mis sur les problèmes techniques d’efficacité ou de sécurité, concluant ainsi qu’une fois sûre, la technique deviendrait acceptable, alors que les véritables préoccupations sont d’ordre social et éthique, et donc beaucoup plus larges.

Ils concluent qu’ « il n’y a aucune justification pour, et de nombreux arguments contre autoriser la modification de la lignée germinale humaine à des fins de reproduction ». Ils appellent à une interdiction de cette modification germinale et à une vaste et large discussion sur les usages socialement responsables de ces technologies génétiques émergentes.

Parmi les signataires français, il y a deux chercheurs de l’Inserm et un de l’Inra.

*Le Center for Genetics and Society  est un organisme à but non lucratif d’information et d’affaires qui s’emploie à encourager les utilisations responsables et la gouvernance sociale efficace des technologies génétiques et reproductives humaines et d’autres technologies émergentes. Il travaille avec un réseau croissant de scientifiques, de professionnels de la santé, de leaders de la société civile.

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Liste des premiers signataires :

  • Jill E. Adams, JD, Executive Director, Center on Reproductive Rights and Justice, UC Berkeley School of Law
  • Enola Aird, Founder, Mothers for a Human Future
  • Rodolfo John Alaniz, PhD, University of California, Berkeley
  • Dr. Michael Antoniou, Head, Gene Expression and Therapy Group, King’s College London; Faculty of Life Sciences and Medicine Department of Medical and Molecular Genetics, Guy’s Hospital, London
  • Tom Athanasiou, Director, Ecoquity.org
  • Dr. Patricia A. Baird, University Killam Distinguished Professor Emerita, University of British Columbia, Canada
  • Carlos Andrés Barragán, University of California, Davis
  • Diane Beeson, PhD, Alliance for Humane Biotechnology
  • Emily Beitiks, PhD, Associate Director, Paul K. Longmore Institute on Disability, San Francisco State University
  • Ruha Benjamin, Department of African American Studies, Princeton University
  • Rajani Bhatia, Assistant Professor, Department of Women’s, Gender, and Sexuality Studies, SUNY at Albany
  • Catherine Bliss, Assistant Professor of Sociology, University of California, San Francisco
  • Deborah Bolnick, PhD, Associate Professor, Department of Anthropology, University of Texas at Austin
  • Catherine Bourgain, Researcher in Human Genetics, INSERM (French National Institute for Health and Medical Research); Fondation Sciences Citoyennes
  • * Deborah Burger, California Nurses Association/National Nurses United
  • Beth Elpern Burrows, (retired) President-Director, The Edmonds Institute
  • Dr. Katayoun Chamany, Associate Professor of Biology, Eugene Lang College for Liberal Arts, The New School
  • Claudia Chaufan, Associate Professor of Sociology and Health Policy, University of California San Francisco
  • Jonathan Chernoguz, Center for Genetics and Society
  • Adele E. Clarke, PhD, Sociology, University of California, San Francisco
  • Francine Coeytaux, Pro-Choice Alliance for Responsible Research
  • Zenei Cortez, California Nurses Association/National Nurses United
  • Eugene P. Coyle, PhD, Public Interest Advocate
  • Jessica Cussins, Master’s candidate, Harvard Kennedy School of Government
  • Alex Dajkovic, Micalis, INRA, France
  • Gwen D’Arcangelis, Assistant Professor, scholar of gender, race, and science studies, California State Polytechnic University, Pomona, California
  • Marsha J. Tyson Darling, PhD, Professor of History & Interdisciplinary Studies; Director, Center for African, Black & Caribbean Studies Programs, Adelphi University, Garden City, New York
  • Marcy Darnovsky, PhD, Executive Director, Center for Genetics and Society, Berkeley, California
  • Miranda Davies, Journal Managing Editor, CoramBAAF, London
  • Prof. Lennard Davis, Distinguished Professor of Arts and Sciences, University of Illinois at Chicago
  • Shamita Das Dasgupta, PhD, Cofounder, Manavi, New Jersey
  • Eniko Demény, Junior Researcher, Center for Ethics and Law in Biomedicine, Budapest, Hungary
  • Kathy Dennis, California Nurses Association/National Nurses United
  • Christina L. Desser
  • Giovanna Di Chiro, PhD, Swarthmore College
  • James M. Diamond, M.D., FAAP
  • Prof. Donna Dickenson, Emeritus Professor of Medical Ethics and Humanities, University of London
  • Pierre Divenyi, PhD, Consulting Professor, Stanford University
  • Kathy Souza Donohue, RN, California Nurses Association/National Nurses United
  • Ole Döring, Professor of Sinology, Department of History and Cultural Studies, The Free University of Berlin
  • Mark Dowie, Writer
  • Elaine Draper, PhD, JD, Professor of Sociology and Director of Law and Society Program, California State University, Los Angeles
  • Justine Durrell, Durrell Law
  • Jerzy Eisenberg-Guyot, University of Washington
  • Carl Elliott, Professor, Center for Bioethics, University of Minnesota
  • Bunny Engledorf, California Nurses Association/National Nurses United
  • Steven Epstein, Professor of Sociology, Northwestern University
  • George Estreich, Author
  • Jonathan Ewbank, Research Director, INSERM (French National Institute for Medical Research)
  • Hedva Eyal, Isha L’Isha, Haifa Feminist Center
  • Connie Field, Filmmaker
  • Anne Finger, Writer
  • Michael J. Flower, Professor of Interdisciplinary Science Studies, Emeritus, University Studies Portland State University, Portland, Oregon
  • Susan Berke Fogel, JD, Pro-Choice Alliance for Responsible Research
  • Marlene Gerber Fried, Professor of Philosophy, Hampshire College
  • Alexander Gaguine, President, Appleton Foundation
  • Dr. Adam Garfinkle, Editor, The American Interest
  • Rosemarie Garland-Thomson, Professor of English; Co-Director, Disability Studies Initiative, Emory University, Atlanta, Georgia
  • Charles Garzon, Director of Finance and Administration, Center for Genetics and Society
  • * Genetic Support Foundation
  • Dr. Sabu Mathew George, Centre for Women’s Development Studies, New Delhi
  • Daniel Gibbs, PhD, Assistant Professor, Department of Neurosciences, Gibbs Lab for CNS Gene Delivery and Therapy, Center for Neural Repair, Translational Neurosciences Institute, University of California, San Diego
  • Scott Gilbert, Howard A. Schneiderman Professor of Biology (emeritus), Swarthmore College
  • Cokie Giles, California Nurses Association/National Nurses United
  • Mickey Gjerris, Asscoiate Professor in Boethics, PhD, University of Copenhagen; Member of the Ethical Council of Denmark
  • Marilyn Golden, Senior Policy Analyst, Disability Rights Education & Defense Fund
  • Alan Goodman, Hampshire College
  • Gene Grabiner, SUNY Distinguished Service Professor Emeritus
  • Rosann Greenspan, PhD, Center for the Study of Law and Society
  • Jeremy Gruber, Former President, Council for Responsible Genetics
  • David H. Guston, Professor and Founding Director, School for the Future of Innovation in Society, Arizona State University
  • Barbara Haber, Psychotherapist
  • Dr. Hille Haker, Richard McCormick Endowed Chair in Ethics, Loyola University, Chicago, Illinois
  • Linda Hamilton, California Nurses Association/National Nurses United
  • Charles Halpern, Emeritus Member, National Academy of Medicine
  • Jaydee Hanson, Policy Director, International Center for Technology Assessment
  • Donna Haraway, Distinguished Professor Emerita, History of Consciousness Dept., University of California at Santa Cruz, Santa Cruz, California
  • J. P. Harpignies, Author, Editor, Environmental Activist
  • Dr. Betsy Hartmann, Professor Emerita, Development Studies, Senior Policy Analyst, Population and Development Program, Hampshire College
  • Richard Hayes, PhD, founding and former Executive Director, Center for Genetics and Society
  • Martha R. Herbert, PhD, MD, Neurology, Harvard Medical School
  • Karen Higgins, California Nurses Association/National Nurses United
  • Daniel Martinez HoSang, Associate Professor of Political Science and Ethnic Studies, University of Oregon
  • Elliot Hosman, JD, Senior Program Associate, Center for Genetics and Society
  • Emilia Ianeva, JD, PhD, California State University East Bay; Alliance for Humane Biotechnology
  • Lisa Ikemoto, Martin Luther King, Jr. Professor, University of California-Davis School of Law
  • Jonathan Xavier Inda, Professor and Chair, Department of Latina/Latino Studies, University of Illinois, Urbana-Champaign
  • Michael Jackson, California Nurses Association/National Nurses United
  • Burt Jacobson, Founding Rabbi, Kehilla Community Synagogue
  • Bruce Jennings, Director of Bioethics, Center for Humans and Nature
  • Sujatha Jesudason, PhD, former Executive Director, Generations Ahead
  • Jonathan Kahn, Professor, Hamline University School of Law
  • Jo Ellen Green Kaiser, Executive Director, The Media Consortium
  • Margie Keenan, California Nurses Association/National Nurses United
  • Catherine Kennedy, California Nurses Association/National Nurses United
  • Andrew Kimbrell, Executive Director, International Center for Technology Assessment
  • David King, PhD, Human Genetics Alert, London
  • David Koepsell, Comision Nacional de Bioetica, Mexico
  • Dr. Suhas Kolhekar, Molecular Virologist and Health Activist, Jan Swasthya Abhiyan / People’s Health Movement, India
  • Regine Kollek, PhD, Professor of Biomedical Technology Assessment; Director of the Research Centre for Biotechnology, Society and the Environment, University of Hamburg
  • Nancy Krieger, PhD, Professor of Social Epidemiology, Department of Social and Behavioral Sciences, Harvard T.H. Chan School of Public Health, Harvard University
  • Catherine Kudlick, PhD, Professor of History and Director, Paul K. Longmore Institute on Disability, San Francisco State University
  • Martha Kuhl, California Nurses Association/National Nurses United
  • * Matthew Legge, Canadian Friends Service Committee (Quakers)
  • Trudo Lemmens, LicJur, LLM (bioethics), DCL, Professor and Scholl Chair in Health Law and Policy, Faculty of Law, Dalla Lana School of Public Health, and Joint Centre for Bioethics, University of Toronto
  • Rabbi Michael Lerner, Editor, Tikkun Magazine
  • Judith Levine, Writer
  • Susan Lindee, Janice and Julian Bers Professor of the History and Sociology of Science, University of Pennsylvania
  • Heidi Lindh, MS, LCGC, Genetic Support Foundation
  • Abby Lippman, PhD, Professor Emerita, McGill University (Montréal, Québec)
  • Margaret F. Lynch, PhD, San Francisco State University
  • Dr. Calum MacKellar, Director of Research, Scottish Council on Human Bioethics
  • John Maguire, University of Pittsburgh
  • Laura Mamo, Professor, Health Equity Institute, San Francisco State University
  • Becky Mansfield, Professor of Geography, Ohio State University
  • Gina Maranto, Director, Ecosystem Science and Policy, University of Miami
  • Charles Margulis, Center for Environmental Health
  • Malinda Markowitz, California Nurses Association/National Nurses United
  • Mary Ann Mason, Professor of the Graduate School, University of California, Berkeley
  • Michelle McGowan, PhD, Associate Professor of Women’s, Gender, and Sexuality Studies; Associate Professor of Bioethics, The Pennsylvania State University
  • Bill McKibben, Author
  • Philip McManus, President, IF: People Seeking Possibilities; Board, Appleton Foundation
  • Everett Mendelsohn, Professor of the History of Science, Emeritus, Harvard University
  • Anuradha Mittal, Executive Director of The Oakland Institute
  • Shree Mulay, Professor, Faculty of Medicine, Memorial University, Newfoundland, Canada
  • Ari Ne’eman, President, Autistic Self Advocacy Network; Former Member, National Council on Disability
  • Stuart A. Newman, PhD, Professor of Cell Biology and Anatomy, New York Medical College
  • Richard Norgaard, Professor Emeritus of Energy and Resources, University of California, Berkeley
  • Judy Norsigian, Founder and former Executive Director, Our Bodies Ourselves
  • Aaron Panofsky, Associate Professor, Institute for Society and Genetics, Public Policy, and Sociology; ISG Vice Chair for Undergraduate Education, University of California, Los Angeles
  • Brendan Parent, JD, Director of Applied Bioethics, New York University School of Professional Studies
  • * Erich Pica, President, Friends of the Earth – U.S.
  • Beth Piknick, California Nurses Association/National Nurses United
  • Tony Platt, Center for the Study of Law & Society, University of California, Berkeley
  • Robert Pollack, PhD, Professor of Biological Sciences, Columbia University
  • Carl Pope, Environmental consultant
  • Joan Rachlin, JD, MPH, Board Chair, Our Bodies Ourselves
  • Dr. Mohan Rao, MBBS, PhD, Professor, Centre of Social Medicine and Community Health, School of Social Sciences, Jawaharlal Nehru University, New Delhi
  • Christoph Rehmann-Sutter, Professor of Theory and Ethics in the Biosciences, University of Lübeck, Germany
  • Milton Reynolds, Board Chair, Literacy for Environmental Justice
  • Dorothy Roberts, JD, George A. Weiss University Professor of Law and Sociology and the Raymond Pace and Sadie Tanner Mossell Alexander Professor of Civil Rights, University of Pennsylvania
  • Janette Robinson Flint, Executive Director, Black Women for Wellness
  • Kathy Roemer, California Nurses Association/National Nurses United
  • Christine Rosen, Senior Editor, The New Atlantis: A Journal of Technology & Society; Future Tense Fellow, New America
  • Jean Ross, California Nurses Association/National Nurses United
  • Loretta Ross, Five Colleges Women’s Studies Research Center
  • Anne Rumberger, Marketing Manager, Verso Books
  • Jane C. Sandoval, RN, California Nurses Association/National Nurses United
  • Marsha Saxton, PhD, Director of Research, World Institute on Disability
  • Gerald S. Schatz, JD of the Bars of Pennsylvania and the District of Columbia
  • Prof. Dr. Silke Schicktanz, University Medical Center, Department for Medical Ethics and History of Medicine, Göttingen, Germany
  • Prof. Dr. Ingrid Schneider, Universitaet Hamburg, Centre for Biotechnology, Society and the Environment – Medicine/Neuronal Sciences
  • Susan Schweik, Professor of English, University of California, Berkeley
  • Peter Selman, Visiting Fellow, School of Geography, Politics & Sociology, Newcastle University, UK
  • Dr. Carmel Shalev, Department for Reproduction and Society, International Center for Health, Law and Ethics, Israel
  • Pete Shanks, Author; Consulting Researcher, Center for Genetics and Society
  • Stephen Shmanske, Emeritus Professor of Economics, California State University, East Bay
  • Evelyne Shuster, PhD Medical Ethics; Advisory Board Member, Global Lawyers and Physicians
  • John M. Simpson, Privacy Project Director, Consumer Watchdog
  • Jeffrey M. Skopek, Lecturer in Medical Law, Ethics and Policy, Faculty of Law, University of Cambridge
  • Prof. Robert Song, Professor of Theological Ethics, Department of Theology and Religion, Durham University
  • Alexandra Minna Stern, University of Michigan
  • Tina Stevens, PhD, Director, Alliance for Humane Biotechnology
  • Katie Stoll, MS, LCGC, Genetic Support Foundation
  • Alan Stoskopf, University of Massachusetts, Boston
  • Shirley Sun, Associate Professor of Sociology, Nanyang Technological University, Singapore
  • Elly Teman, PhD, Ruppin Academic Center, Israel
  • Charis Thompson, University of California Berkeley, London School of Economics
  • Sheila R. Tully, PhD, Department of Anthropology, San Francisco State University
  • Leif Wellington Haase, LWH Consulting
  • Gabriele Werner-Felmayer, PhD, associate professor, Division of Biological Chemistry, Biocenter and Bioethics Network Ethucation, Medical University of Innsbruck, Innsbruck, Austria
  • Sally Whelan, Co-founder, Our Bodies Ourselves
  • Peter Whitehouse, Professor of Neurology and current Professor of Psychiatry, Neuroscience, Psychology, Cognitive Science, Bioethics, Nursing, History, and Organizational Behavior, Case Western Reserve University; Strategic Advisor in Innovation and Visiting Scholar, Baycrest and Professor of Medicine and Institute of Life Course and Aging, University of Toronto; President, Intergenerational Schools International
  • Stacey Wickware, Social Science & Medical Ethics Educator
  • Donna Kelly Williams, California Nurses Association/National Nurses United
  • Patricia Williams, James L. Dohr Professor of Law, Columbia University School of Law
  • France Winddance Twine, Professor of Sociology, University of California, Santa Barbara; Research Justice Scholar, Mills College, Oakland
  • David Winickoff, Associate Professor of Bioethics, University of California, Berkeley
  • Lee Worden, University of California, San Francisco
  • Susan Wright, Professional Researcher, History of Science, Department of Politics, University of California, Santa Cruz
  • Jane Yett, Consultant
  • Gregg Pascal Zachary, Arizona State University, School for the Future of Innovation in Society
  • Barry Zuckerman, PhD, President, Adax, Inc.