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Sponsored by West Harlem Environmental Action, in collaboration with National Institute of Environmental Health Sciences and the Center for Environmental Health at Columbia University.

Background: Genetic Research and its Ethical Implications

The "decoding" of the human genome, 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. One area in which genetic research holds promise is environmental health. A better understanding of the genetic basis for susceptibility to environmental exposures can allow for better protection, early detection and prevention of potential health problems. It may also improve risk assessment methodologies by more accurately accounting for individual susceptibility. An improved understanding of gene-environment interactions may lead to the ability to better identify and control the environmental exposures associated with negative health impacts.

However, as much potential as genetic research may hold for improving human health, the increased knowledge of human genetic makeup also gives rise to numerous ethical concerns. These concerns include protecting individuals' privacy; preventing discrimination in insurance or employment; providing effective genetic counseling; and handling proprietary issues related to DNA collection and sequencing. There are also concerns associated with the amount of public resources devoted to genetics research. Furthermore, if genetics research is to prevent disease and improve health, it is important that it focus on better understanding the complex interaction between genes and the environment, rather than attempting to reduce the causes of disease to a simple genetic explanation. If these concerns are to be adequately addressed, it is crucial that an effective and ongoing dialogue takes place between the scientists and policymakers involved with human genetics and the community advocates concerned about the social and ethical implications.

Research into human genetics presents unique opportunities and challenges for environmental justice. As the potential for genetic research as a tool to improve environmental health unfolds, it is important to ensure that the benefits accrue to communities that have suffered a disproportionate burden of environmentally influenced health problems, including communities of color. If communities of color are to realize the potential benefits offered by genetic research, it is crucial that we have a working knowledge of the science behind genetics research, a voice in setting the research agenda and the opportunity to participate in this research in a manner that meets our ethical concerns.

Goals of the Conference

On Monday, February 4th, 2002, WE ACT will present a major conference, "Human Genetics, Environment, and Communities of Color: Ethical and Social Implications," which will create a unique forum for a dialogue between scientists, policymakers, community advocates, and experts from legal and other professional fields. This conference creates a unique opportunity by prioritizing community participation in a discussion on the science and ethics of genetic research, and by creating a forum in which technical experts and environmental justice advocates can participate as equals. The first goal of the conference is to help educate environmental justice and other community advocates on the science and policy behind genetic research in a simple yet comprehensive format accessible to the layperson. At the same time scientists and policymakers will be educated on the environmental and social justice issues that affect and are affected by genetic research.

While recognizing that genetics research may hold potential for improving environmental health, WE ACT is also concerned about the ethical and social justice implications arising from the project as discussed above. The second goal of the conference is to create a forum in which these concerns can be addressed, and in which the EJ community can strategize on responding to the concerns raised by genetics research.

Conference Content and Format

"Human Genetics, Environment, and Communities of Color: Ethical and Social Implications" will take place on February 4th at Columbia University, while a satellite symposium for community advocates will take place on February 5th. Over 300 scientists, policymakers, ethicists, lawyers, community advocates and other professionals are expected to attend on the first day. The first day is open to the public and will be comprised of panel discussions and breakout group discussions. The satellite symposium on the 5th will have a smaller working group format, with participation limited to 75-100 invitees, comprised predominantly of community advocates, as well as scientists, ethicists, lawyers, and policymakers. From this working group session a set of principles for how those in the environmental justice field can best respond to and benefit from human genetics research will be developed. In addition, the proceedings of the conference will include a clear, comprehensive primer on the science of the genetics research, accessible to lay people, which will be distributed separately to a wider audience.

See Also: "Save the Date"

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