Human Genome Project
U.S. Department of Energy

HGP Research Area: Ethical, Legal, and Social Issues Research

One of the key research areas of the HGP was ethical, legal, and social issues (ELSI).

The U.S. Department of Energy (DOE) and National Institutes of Health (NIH) devoted 3% to 5% of their annual HGP budgets toward ELSI research surrounding availability of genetic information. This represents the world’s largest bioethics program. It has become a model for ELSI programs around the world.

Rapid advances in the science of genetics and its applications have presented new and complex ethical and policy issues for individuals and society. ELSI programs that identify and address these implications were an integral part of the U.S. HGP since its inception. These programs resulted in a body of work that promotes education and helps guide the conduct of genetic research and the development of related medical and public policies.

A continuing challenge is to safeguard the privacy of individuals and groups who contribute DNA samples for large-scale sequence-variation studies. Other concerns have been to anticipate how the resulting data may affect concepts of race and ethnicity; identify potential uses (or misuses) of genetic data in workplaces, schools, and courts; identify commercial uses; and foresee impacts of genetic advances on the concepts of humanity and personal responsibility.

ELSI Research Goals

  • Examine issues surrounding the completion of the human DNA sequence and the study of human genetic variation.
  • Examine issues raised by the integration of genetic technologies and information into healthcare and public health activities.
  • Examine issues raised by the integration of knowledge about genomics and gene-environment interactions in non-clinical settings.
  • Explore how new genetic knowledge may interact with a variety of philosophical, theological, and ethical perspectives.
  • Explore how racial, ethnic, and socioeconomic factors affect the use, understanding, and interpretation of genetic information; the use of genetic services; and the development of policy.

Text from “New Goals for the U.S. Human Genome Project: 1998-2003,” Science 282: 682–689 (1998).

ELSI Research Funded by the U.S. Department of Energy

Products of ELSI Research

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