Report of the Joint NIH/DOE Committee to Evaluate the Ethical, Legal and Social Implications Program of the Human Genome Project.

December 1996

A committee established last spring to evaluate the Human Genome Project's (HGP) Ethical, Legal and Social Implications (ELSI) Working Group has delivered its final report to project leaders at the National Center for Human Genome Research (NHGRI) and the U.S. Department of Energy (DOE). The report will be forwarded to the agencies' advisory committees, who will then decide early next year how to act on the recommendations.

In a December 12 letter, committee chairs Mark Rothstein, J.D. and Anne Spence, Ph.D., presented the report to Francis Collins, M.D., Ph.D., director of the NHGRI, and to Ari Patrinos, Ph.D., associate director for health and environmental research at the DOE. NHGRI is part of the federal government's National Institutes of Health (NIH).

The evaluation committee was established last April to consider the Working Group's role in the overall ELSI programs of the two agencies. Known formally as the Joint NIH/DOE Working Group on the Ethical, Legal and Social Implications of Human Genome Research, the Working Group was established in 1989 to guide NHGRI and DOE ELSI research programs as well as explore and propose options for sound professional and public policies related to human genome research and its applications.

According to the report, "The Ethical, Legal, and Social Implications program is an integral part of the Human Genome Project, and it will continue to be essential as the focus of scientific research increasingly shifts to applied genetics."

The report recommends dividing the Working Group's responsibilities among different committees and at various levels within the government.

Specifically, it says: "First, a newly established ELSI Research Evaluation Committee should have responsibility for oversight of the extramural ELSI grant portfolios at NHGRI and DOE. Second, an NIH-wide process should be used to coordinate the ELSI activities of the various institutes engaged in genetic research. Third, a federally chartered Advisory Committee on Genetics and Public Policy should be established in the Office of the Secretary of [Health and Human Services] to undertake the formulation of public policy resulting from advances in genetics."

NHGRI's National Advisory Council for Human Genome Research will consider the recommendations in an open session on February 20, in Bethesda, Md. DOE's Genome Subcommittee of their Health and Environmental Research Advisory Committee will meet on the matter sometime in March.

Last updated: May 16, 2010