The Ethical, Legal, and Social Implications Research Program at the National Human Genome Research Institute

Eric M. Meslin, Elizabeth J. Thomson, Joy T. Boyer

Research output: Contribution to journalArticle

50 Scopus citations

Abstract

Organizers of the Human Genome Project (HGP) understood from the beginning that the scientific activities of mapping and sequencing the human genome would raise ethical, legal, and social issues that would require careful attention by scientists, health care professionals, government officials, and the public. The establishment of the ELSI (ethical, legal, and social implications) programs at the National Human Genome Research Institute (NHGRI) and the Department of Energy (DOE) was thought to be vital to the success of the HGP in the United States. It also provided a novel approach to the simultaneous study of ethical, legal, and social issues and basic scientific issues. Eric Juengst, the first director of the ELSI program, described its origins in a previous issue of the Kennedy Institute of Ethics Journal (Juengst 1991). Now in its seventh year, the ELSI program has accomplished much. This article summarizes the evolution and goals of the ELSI program at NHGRI, outlines the program's current research priorities with examples of activities within each priority area, and provides a look to the future, including the initiation of a strategic planning process.

Original languageEnglish (US)
Pages (from-to)291-298
Number of pages8
JournalKennedy Institute of Ethics journal
Volume7
Issue number3
StatePublished - Sep 1 1997

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ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health(social science)
  • Health Policy
  • History and Philosophy of Science

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