Human Genetics, Environment, and Communities of Color. (Special Meeting Report).

The Human Genome Project and other advances in genetics, informatics, and molecular biology have expanded the possibilities new discoveries of how genes determine human susceptibility to disease. But the potential for misuse of genetic information raises many ethical concerns, especially for minority populations.

These concerns were the topics of discussion at the 4 February 2002 conference Human Genetics, Environment, and Communities of Color: Ethical and Social Implications, held in New York City and sponsored by a collaboration between West Harlem Environmental Action, Inc. (WEAct), the NIEHS's Center for Environmental Health in northern Manhattan at the Mailman School of Public Health, Columbia University, and the U.S. Environmental Protection Agency. The organizers hope that "the conference will lead to proactive collaboration on the issues brought on by the study of gene-environment interactions," says Peggy Shepard, executive director of WEAct.

Gene-environment interactions are a major research interest of the NIEHS. In 1997, the NIEHS started the Environmental Genome Project, which will resequence a set of environment-responsive genes that may be involved in disease causation. In his speech at the conference, Kenneth Olden, director of the NIEHS, emphasized the need for the public to have a basic understanding of genomics, its implications, and its promise. To address this need, a satellite meeting titled Genetics 101 provided a basic overview of genetic science and gene-environment interactions for community leaders.

The public's lack of information on genomics is not the only barrier to realizing the promise of genetic research in communities of color. There is also a lack of understanding on the part of scientists. Debra Harry, executive director of the Indigenous Peoples Council on Biocolonialism based in Wadsworth, Nevada, said at the meeting that "genetic material represents our lineage--it is passed down from our ancestors from generation to generation. This lineage is holy." Scientists must learn about these and other important cultural, social, and political implications that genomics has for the populations participating in genetic research, she says.

Another conference discussion of the challenges that have arisen in the field of genomics was the potential for genetic discrimination. Paul Steven Miller, commissioner of the Equal Employment Opportunity Commission, asserted that the potential for genetic discrimination is no longer science fiction. "The mere fear of discrimination can keep people from seeking genetic counseling, and they may miss out on the medical benefits of these technologies," he said. During breakout sessions, participants discussed ways in which many different agencies, including those in employment, health, and insurance areas, could work together to address these difficult questions.

Issues arising from the study of gene environment interactions add more complexity to the debate on the ethical use of genomics. "Some environmental justice advocates have voiced concern that genetic research shifts the focus from the polluters to the individuals affected by the pollution," said Shepard. This shift in focus may be interpreted to imply that genetic susceptibility is more important in assessing risk than is environmental exposure. But the conference consensus was that both genetic and environmental influences are important in causing disease. "To try to understand genetic influence on disease without the environmental component is truly insufficient," said Monique Mansoura, a genomics policy analyst at the National Human Genome Research Institute in Bethesda, Maryland.

Genomics promises to provide useful tools for disease prevention in all communities. Said Olden, "If existing opportunities in genomics are translated into reality, future generations will live with less pain and less suffering in a world where prevention is not only the highest priority, but is also achievable."