UMBI, UMB sponsor conference on minorities and the Human Genome Project

College Park---How will the findings of the Human Genome Project (HGP) be used with regard to the health status of minority communities?

This important issue is among a number of ethical, social and legal implications of the HGP that are being discussed today and tomorrow at a conference co-sponsored by the University of Maryland Biotechnology Institute (UMBI) and the University of Maryland, Baltimore (UMB).

Titled "The Human Genome Project: Reaching Minority Communities in Maryland," the meeting is a first-of-its-kind effort nationwide to bring together scientists and leaders of minority organizations, along with government officials, to exchange information and learn about one another's interests and concerns regarding the HGP. Participants include representatives of church groups, and neighborhood associations from Maryland's African-American, Hispanic, Native American, and Asian communities.

The HGP is a decade-long, multi-billion dollar effort under the stewardship of the U.S. Department of Energy and the National Human Genome Research Institute to identify and map every human gene by the year 2005. Results gained from its findings will affect the diagnosis and treatment of both hereditary and non-hereditary diseases. Genetic factors that predispose certain population groups to infectious and other diseases are likely to become known, making possible the development of improved preventive strategies.

Yet negative effects also are possible, such as the potential for insurance companies to use data generated by the HGP to exclude persons they consider high risk from coverage, or the potential for employers to use such information in hiring decisions. Conference organizers therefore emphasize the value for all people to become knowledgeable about the HGP so they can help develop sound health and social policy and make informed decisions.

"Minority communities, much like the rest of the population, know little about the Human Genome Project," said Ray Zilinskas, Ph.D., a research associate professor at UMBI's Center for Public Issues in Biotechnology. "It's important for all people to understand why this massive undertaking is under way. Unlocking the mysteries of the human genome, the sum total of our genetic makeup, will advance research on everything from mental illness to cancer, yet we have to balance how this information is used."

First-day speakers are addressing how the HGP will benefit individuals and families, the use and misuse of genetic information by employers and insurers, privacy issues and legal rights. On the second day of the conference participants will develop a long-term action plan to identify how HGP representatives can reach minority communities throughout Maryland, monitor how the scientific findings affect people in their daily lives, and develop a pathway for continuing minority input on the project. Sponsors anticipate that this conference will become a model for other states to adapt.