The "decoding" of the human genome -- the collective genetic make-up of human beings -- , announced in June 2000, has been heralded as one of the major scientific breakthroughs in recent history, with the potential to usher in a new era of human health protection. However, many concerns have arisen about the potential for exploitation and misuse of this technological breakthrough. As the research and development of human genetics unfolds with increasing speed, do adequate structures exist for communities to address the ethical and social implications created by these new technologies? How will genetics research impact on communities of color, and how can we best inform and prepare ourselves to handle both the challenges and opportunities posed by this new knowledge?
This national conference will bring community advocates, policy makers, and scientists from across the country together to educate one another and to answer these questions. Conference participants can expect to learn some of the science upon which genetics research is based, and participate in discussions around critical ethical, legal, and social implications of human genetics for communities and people of color and for environmental justice.
|9:00AM||Welcome: Regina Santella, Ph.D., Director, NIEHS Center for Environmental Health, and Peggy Shepard, Executive Director, West Harlem Environmental Action (WE ACT)|
|9:15AM||Introductory remarks: Kenneth Olden, Ph.D., Director, NIEHS
"The Role of Gene-Environment Interaction in Health Disparities."
Troy Duster, Ph.D., Professor of Sociology, New York University
"Human Molecular Genetics and the Subject of Race: Contrasting the Rhetoric with the Practices in Law and Medicine"
Opportunities and Challenges of Genetics Research for Communities of Color and for the Environment|
This panel will present an overview of both the opportunities and some specific ethical and social challenges posed by human genetics research for communities of color, including the role of genetics in disease causation, genetic reductionism, the meaning and implications of "race-based" genetics research, and concerns surrounding potential discrimination in the workplace.
|1:00PM||Breakout Sessions Part A (Four Concurrent Sessions)|
A1) What Itís All About: Human Genetics 101 and Gene-Environment Interactions
This session will provide a basic overview of genetic science, focusing on the interaction between genes and the environment in the causation and treatment of disease, on the Environmental Genome Project and on toxicogenomics.
A2) Genetic Testing on the Job? Genetics in the Workplace
A3) What Will This Test Tell Me? Genetic Testing, Genetic Counseling and Risk Communication
A4) How Informed Can Consent Be? Participation of Communities and People of Color in Genetics Research
|3:00PM||Breakout Sessions Part B (Four Concurrent Sessions)|
B1) Is it Genes or is it the Environment? Community Environmental Health and Genetics.
This session will focus on the how community environmental health will be impacted by genetics research, including a discussion on the potential that genetic information has to redefine "susceptibility" to environmental exposures. Asthma will be presented as a case study of the complex interactions between genetics and environmental exposures in an illness that disproportionately affects people of color.
B2) How Informed Can Consent Be? Participation of Communities and People of Color in Genetics Research
(Second of two similar sessions, this session focuses on the potential use of genetic information to define group and individual identity. Preceded by Session A4 at 1:00PM)
B3) What Do People Really Think of This? Community Perceptions of Genetics Research
B4) Who is Regulating Genetics? Legislative, Policy, and Judicial Responses to Genetics Research
The Future of Human Genetics Research, Communities of Color, and Environmental Justice|
This conference is supported in part by the California Endowment, The StarFire Fund of the Philanthropic Collaborative, and The Warsh/Mott Legacy.
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