Human Genetics, Environment, and Communities of Color: Ethical and Social Implications
February 4, 2002
Once the human genome was decoded in 2000, a new era of human health protection was ushered in. With this opportunity though, came the possibility for the misuse and exploitation of this technological breakthrough. The goal of WE ACT’s national conference on “Human Genetics, Environment, and Communities of Color: Ethical and Social Implications” was to bring together community advocates, policy makers, and scientists from across the country to educate one another and to answer questions about the ethical and social implications created by new technologies, the impact of genetic research on communities of color, and the best ways to inform and prepare ourselves to handle both the challenges and opportunities posed by new genetic knowledge. Conference participants learned some of the science upon which genetics research is based, and participated in discussions around critical ethical, legal, and social implications of human genetics for communities and people of color and for environmental justice.
Sponsored by:
National Institute of Environmental Health Sciences (NIEHS)
NIEHS Center for Environmental Health in Northern Manhattan (Community Outreach and Education Program)
U.S. Environmental Protection Agency
Additional funding provided by:
Ford Foundation
The California Endowment
StarFire Fund of the Philanthropic Collaborative, Inc.
Warsh-Mott Legacy
Conference Topics
Keynote Address: Human Molecular Genetics and the Subject of Race: Contrasting the Rhetoric with the Practices in Law and Medicine / Dr. Troy Duster, Professor of Sociology, New York University
Opening Panel Discussion: Opportunities and Challenges of Genetics Research of Communities of Color / Moderator: Regina Santella, Ph.D., NIEHS Center for Environmental Health in Northern Manhattan / Panelists: Paul Steven Miller, JP, U.S. Equal Employment Opportunity Commission (EEOC) / Debra Harry, MA, Indigenous Peoples Council on Biocolonialism
Panel Discussion A1: What It’s All About: Human Genetics 101 and Gene-Environment Interactions / Moderator: Regina Santella, Ph.D., NIEHS Center for Environmental Health in Northern Manhattan / Panelists: Jose Morales, Ph.D., Public Interest Biotechnology / Monique Mansoura, Ph.D., National Human Genome Research Institute / Samuel Wilson, Ph.D., National Institute of Environmental Health Sciences
Panel Discussion A2: Genetic Testing on the Job? Genetics in the Workplace / Moderator: George Friedman-Jimenez, M.D., Occupational and Environmental Medicine Clinic, Bellevue Hospital / Panelists: Paul A. Schulte, Ph.D., National Institute of Occupational Safety and Health / Dr. Susan Vandale-Marentes, Ph.D., Center for Environmental Genetics, University of Cincinnati / Paul Steven Miller, JP, U.S. Equal Employment Opportunity Commission (EEOC)
Panel Discussion A3: What Will This Test Tell Me? Genetic Testing, Genetic Counseling, and Risk Communication / Moderator: Caroline Lieber, Ph.D., Sarah Lawrence College / Panelists: Vivian Ota Wang, Ph.D., Arizona State University / Kwame Anyane-Yeboa, M.D., Columbia Medical School / Ilana Mittman, M.A., Johns Hopkins Medical School
Panel Discussion A4: How Informed Can Consent Be? Participation of Communities and People of Color in Genetics Research / Moderator: Dennis Derryck, Ph.D., New School University / Panelists: Kim Nickerson, Ph.D., American Psychological Association / Richard Sharp, Ph.D., National Institute of Environmental Health Sciences / Patricia Marshall, Ph.D., Case Western Reserve University
Panel Discussion B1: Is It Genes or is it the Environment? Community Environmental Health and Genetics / Moderator: Jose Morales, Ph.D., Public Interest Biotechnology / Panelists: Manuela Orjuela, M.D., Columbia University, Mailman School of Public Health / John Pappas, M.D., New York University School of Medicine / Julian Preston, Ph.D., U.S. Environmental Protection Agency /
Panel Discussion B2: How Informed Can Consent Be? Participation of Communities and People of Color in Genetic Research / Moderator: Sandra Soo-Jin Lee, Ph.D., Stanford University / Panelists: Vence Bonham, J.D., Michigan State University / Charmaine Royal, Ph.D., National Human Genome Center at Howard University / Debra Harry, MA, Indigenous Peoples Council on Biocolonialism
Panel Discussion B3: What Do People Really Think of This? Community Perceptions of Genetic Research / Moderator: Patricia Fraser, M.D., Harvard Medical School / Panelists: Tené Hamilton, Tuskegee University / Yvonne Lewis, Faith Access to Community Economic Development
Panel Discussion B4: Who is Regulating Genetics? Legislative Policy and Judicial Responses to Genetics Research / Moderator: Steven Redmon, JD, United States Military Academy / Panelists: Rebecca Charnas, Council for Responsible Genetics / Marcy Darnovsky, Ph.D., Center for Genetics and Society / Paul Billings, M.D., Gene Sage
Closing Plenary: Impacts of Genetics Research on Environmental Health and Communities of Color / Kathleen Rand Reed, Ph.D., MAA Geographic Genetic System/The Rand Reed Group / Damu Smith, National Black Environmental Justice Network