Last updated: May 06, 2013
1990: ELSI Founded
Ethical, Legal and Social Implications (ELSI) programs founded at NIH and DOE.
The planners of the U.S. Human Genome Project (HGP) recognized that the information gained from mapping and sequencing the human genome would have profound implications for individuals, families, and society. While this information would have the potential to dramatically improve human health, it would also raise a number of complex ethical, legal and social issues. Among them: How should the newly accessible genetic information be interpreted and used? Who should have access to it? How can people be protected from the harm that might result from its improper disclosure or use?
To address these issues, the Ethical, Legal and Social Implications (ELSI) Program was established as an integral part of the HGP. The ELSI Program was designed to identify, analyze, and address the ethical, legal and social implications of human genetics research at the same time that the basic scientific issues are being studied. Ideally, potential problems can be identified and solutions developed before the new scientific information is integrated into health care practice.
The NIH's National Human Genome Research Institute (NHGRI) committed 5 percent of its annual research budget to study ELSI issues. The DOE Office of Energy Research, NHGRI's partner in the U.S. Human Genome Project, also reserves a portion of its funding for ELSI research and education.