Task Force to consider implications of Human Genome Project for minorities in Maryland

COLLEGE PARK--- Leaders of minority communities in Maryland will meet as a task force at the Baltimore Urban League on July 26 to make sure their interests and concerns are heard in conjunction with the Human Genome Project (HGP). Drawing from ideas expressed during a conference held in June and co-sponsored by the University of Maryland Biotechnology Institute (UMBI) and the University of Maryland, Baltimore (UMB), the task force will develop a long-term action plan for increasing awareness within minority groups about the HGP.

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.

The long-term action plan will seek to provide minority communities full information about the HGP, its applications, and the ethical, legal, and social issues it might generate. At the same time, the plan will seek to convey to HGP scientists and policy-makers the aspirations and concerns of the minority communities. Sponsors anticipate reference to issues such as ensuring that the human genome database that is being developed by the HGP includes genetic information about minorities, and that diagnostic and therapeutic applications from the HGP benefit all population groups equally.

The task force includes representation from the African-American, Asian, Hispanic, and Native American communities. Members are mostly laypersons, working for churches, community centers, state and city governments, and social and cultural organizations.

"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 make certain that this information is used equitably and in a non-discriminatory manner."

Some concerns have arisen about possible misapplications of information generated by the HGP, such as the potential for insurance companies to use data generated by the HGP to exclude persons they consider high risk from coverage, or employers using such information in hiring decisions. The White House has introduced legislation to prevent discrimination by insurance companies against healthy people based on genetic testing. Organizers of the June conference have emphasized 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. Issues that need to be addressed included how the HGP will benefit individuals and families, the use and misuse of genetic information by employers and insurers, privacy issues and legal rights, and economic opportunities for minorities with the HGP such as jobs, collaborations and partnerships, and owning or investing in research companies.