Center for Genetics and Society

The Center for Genetics and Society (CGS) is a nonprofit information and public affairs organization, based in Berkeley, California, United States. It encourages responsible use and regulation of new human genetic and reproductive technologies.

CGS provides analysis and educational materials in addition to organizing conferences, workshops, and briefings. It is particularly critical of proposals for reproductive human cloning and germline genetic modification — uses of technology that it considers socially irresponsible.

CGS is a politically progressive and pro-choice organization. Its key areas of concern include: genetic modification of humans, stem cell research, DNA forensics, preimplantation genetic diagnosis, commercial and cross-border surrogacy, race and genetics, race-based medicines, egg retrieval, designer babies, human cloning, social sex selection, genetics and disability rights, direct-to-consumer genetic testing, human applications of synthetic biology, and the legacy of the US eugenics movement.

The executive director of CGS is Marcy Darnovsky. The organization's Advisory Board includes Francine Coeytaux, Dorothy Roberts, and Alexandra Minna Stern. CGS’s current research fellows are Osagie Obasogie (Senior Fellow), Diane Beeson, Lisa Ikemoto, and Gina Maranto.

History

The Center for Genetics and Society was founded in October 2001 under the leadership of Richard A. Hayes, Ph.D. to advocate for social oversight and control of new human biotechnologies.^[1] It drew from and continues to promote discussions and collaborations with key leaders in science, medicine, women’s health, racial justice, disability rights, environmental justice, and human rights. A primary focus of the organization has been to alert civil society constituencies to the challenges posed by new human genetic technologies and assist them in building their capacity to engage in the discussions and debates about appropriate regulation.^[2]

CGS organizes and presents at key conferences and symposiums on biopolitical issues both nationally and internationally; conducts briefings for interest groups and elected officials; engages in selected policy interventions; and has a widespread media presence that includes high-profile publications, an active blog, and social media.

In 2005, CGS received a “Local Heroes” award from the San Francisco Bay Guardian.^[3] In 2006, current Executive Director Marcy Darnovsky was named one of five “women in bioethics making a difference” by the Women’s Bioethics Project.^[4]

Selected Policy Interventions

• CGS has engaged with the U.S. Food and Drug Administration and the U.K. Department of Health and Human Fertilisation and Embryology Authority over proposals for human trials of a procedure that would produce inheritable genetic modifications, so-called “three-person IVF.”
• CGS filed several amicus briefs in the lawsuit against Myriad Genetics concerning its breast-cancer gene patents. In June 2013, the Supreme Court ruled unanimously that naturally occurring human genes cannot be patented.
• CGS supported the successful 2006 bill SB 1260, which ensures that women in California who provide eggs for private research are accorded all established federal and state protections for human research subjects, and limits reimbursement to their direct expenses. It helped defeat the 2013 bill AB 926, which would have removed these provisions.
• CGS played a lead role in holding California’s $3 billion stem cell research agency accountable to the state’s legislature and public. It submitted invited testimony to the "Little Hoover" Commission on California State Government Organization and Economy in 2008 and to the Institute of Medicine Committee in 2012, focusing on the conflicts of interest built into the agency’s governing board.
• CGS was involved in the early stages of the 2000-2005 United Nations effort to propose an international treaty prohibiting human reproductive cloning.

Selected Events and Conferences

CGS organized or co-organized the following conferences:

• Celebrating Troy Duster, 2015, Berkeley, California
• The global surrogacy section of the International Forum on Intercountry Adoption and Global Surrogacy, 2014, The Hague, Netherlands
• Future Past: Disability, Eugenics, and Brave New Worlds, 2013, San Francisco, California
• Eugenics in California: A Legacy of the Past?, 2012, Berkeley, California
• The Tarrytown Meetings, 2010-2012, Tarrytown, New York
• Gender and Justice in the Gene Age, 2004, New York, New York
• The Next Four Years, the Biotech Agenda, and the Human Future, 2004, New York, New York
• Within and Beyond the Limits to Human Nature, 2003, Berlin, Germany
• Beyond Cloning: Protecting Humanity From Species-Altering Procedures, Boston, Massachusetts, 2001

The Tarrytown Meetings

Organized by the Center for Genetics and Society, the Tarrytown Meetings in Tarrytown, New York, were held in July 2010, 2011, and 2012. The meetings brought together 200 advocates, policy experts, scholars, and others to discuss how emerging human biotechnologies could be used to “support rather than undermine social justice, equality, human rights, ecological integrity and the common good.”^[5]

The primary goals of the meeting were to build an advocacy network across scholarly disciplines and civil society groups; collaborate on and discuss research and policy efforts relating to the development, use, and regulation of biotechnologies; and promote organization, outreach, and communication abilities. Among the topics addressed at the meeting were genetic testing and personalized medicine, assisted reproductive technologies and practices, race and genetics, DNA forensics, human genetic modification, and synthetic biology. The meeting generated a report entitled Building a New Biopolitics: The Story of the Tarrytown Meetings, 2010–2012.^[6]

Talking Biopolitics

Since 2012, CGS has produced the live web-based interview series Talking Biopolitics, in which writers, scholars, and activists discuss critical biopolitical issues.

Selected speakers have included:

• Nathaniel Comfort interviewed by Alexandra Minna Stern (02/27/2015)
• Charis Thompson interviewed by David Winickoff (10/02/2014)
• Donna Dickenson interviewed by Osagie Obasogie (07/16/2013)
• Harriet Washington interviewed by Lisa Ikemoto (05/08/2012)
• Dorothy Roberts interviewed by David Winickoff (04/10/2012)
• Bill McKibben interviewed by Marcy Darnovsky (03/02/2012)

Selected Reports

• Beyond Bioethics: Towards a New Biopolitics anthology (forthcoming, University of California Press, 2016)
• Extreme Genetic Engineering and the Human Future: Reclaiming Emerging Biotechnologies for the Common Good, co-published with Friends of the Earth (forthcoming, 2015)
• Global Surrogacy Practices (2014)
• Building a New Biopolitics: The Story of The Tarrytown Meetings (2012)
• Playing the Gene Card? A Report on Race and Human Biotechnology (2009)
• Responsible Federal Oversight of the New Human Biotechnologies: Opportunities for the New Administration (2009)
• Geneticizing Disease: Implications for Racial Health Disparities, co-published with the Center for American Progress (2008)
• Is there an emerging international consensus on the proper uses of the new human genetic technologies? (2008)
• Assisted Reproductive Technologies: Overview and Perspective Using a Reproductive Justice Framework (2007)
• The California Stem Cell Program at One Year: A Progress Report (2006)
• Stem Cells and Public Policy, published by The Century Foundation (2006)

Selected Op-Eds and Articles

• “Direct-to-Consumer Genetic Tests Should Come With a Health Warning.” Jessica Cussins, Pharmaceutical Journal, January 15, 2015.
• Biopolitics [PDF] by Marcy Darnovsky and Emily Smith Beitiks, Encyclopedia of Bioethics, 4th Edition, Bruce Jennings, Editor in Chief, 2014 Gale.
• “Is the UK Being Too Hasty Over Three-Parent Babies?” Marcy Darnovsky and Donna Dickenson, New Scientist, June 3, 2014.
• “High-Tech, High-Risk Forensics.” Osagie K. Obasogie, New York Times, July 24, 2013.
• “A Slippery Slope to Human Germline Modification.” Marcy Darnovsky, Nature, July 9, 2013.
• “The Bleak New World of Prenatal Genetics.” Marcy Darnovsky and Alexandra Minna Stern, Wall Street Journal, June 12, 2013.
• “Who Should Own DNA? All of Us.” Marcy Darnovsky and Karuna Jaggar, Los Angeles Times, April 12, 2013.
• “All That Glitters Isn’t Gold.” Osagie K. Obasogie and Troy Duster, Hastings Center Report, October 12, 2011.
• “Assisted Reproduction and Choice in the Biotech Age: Recommendations for a Way Forward.” Francine Coeytaux, Marcy Danovsky, Susan Berke Fogel, Contraception, January 2011.
• “The Dangers of Growing DNA Databases.” Osagie K. Obasogie, Los Angeles Times, April 9, 2010.
• “Genetically Modified Humans? No Thanks.” Richard Hayes, Washington Post, April 15, 2008.

Funding

CGS is a project of the Tides Center, a 501(c)3 organization funded by individual contributions and philanthropic foundations.^[7] CGS receives support from private donors and from foundations and trusts including the Appleton Foundation; Lyman B. Brainerd, Jr. Family Foundation; and John D. and Catherine T. MacArthur Foundation.^[8]

See also

• Bioethics
• Biopolitics
• Nonprofit organization

External links

• Center for Genetics and Society
• Biopolitical Times, the blog of the Center
• Genetic Crossroads, blog at Psychology Today
• BioPolicyWiki
• Talking Biopolitics
• The Tarrytown Meetings
• The CGS Twitter page
• The CGS Facebook page

References