HGP Research Area: Ethical, Legal, and Social Issues Research
The Human Genome Project (HGP) was completed in 2003. One of the key research areas was ethical, legal, and social issues (ELSI). This page has more information about this research.
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.
Human Genome Project ELSI
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
- U.S. DOE HGP Projects in Ethical, Legal, and Social Issues
- Abstracts from DOE Human Genome Program Contractor-Grantee Workshops
- Abstracts from U.S. DOE Human Genome Program Reports
- "Five Years of Progress in the Human Genome Project: Ethical, Legal, and Social Implications" (Human Genome News, December 1995)
Some Products of ELSI Research
- "Retrospective of the DOE ELSI Program (1990-2000)": A history of the program.
- The New Genetics™: Medicine and the Human Genome—a CD-ROM course for medical professionals and students, policymakers, members of the public, and others interested in the impact of genetics, and genomics on healthcare and society. Continuing Medical Education credits available. Produced by Twisted Ladder Media.
- Challenges of Genome Research for Minority Communities Conference Proceedings —proceedings from the second in a series of conferences led by the Zeta Phi Beta Sorority National Educational Foundation.
- Your Genes, Your Choices: A booklet describing the Human Genome Project; the science behind it; and the ethical, legal, and social issues raised by the project. Also mirrored on this site.
- DOE Primer on Molecular Genetics: Covers the basic science of the program.
- To Know Ourselves: An overview of the underlying science of the Human Genome Project.
- ELSI Bibliography (list of publications prior to 1995).
- Pathways and Barriers to Genetic Testing and Screening. Molecular Genetics Meets the High-Risk Family: A report from a study of families at risk for sickle cell disease, cystic fibrosis, or thalassemia.
- Public Sector Genetic Services in Florida and Georgia. Current Status and Potential Issues Raised by the Human Genome Project: Effects of the changing science and technology on public-sector genetic services, focusing on the organizational structure and function of programs in two states (1996).
- NCHGR-DOE Guidance on Human Subjects Issues in Large-Scale DNA Sequencing.
- The Task Force on Genetic Testing: Promoting Safe and Effective Genetic Testing in the United States - Principles and Recommendations (May 19, 1997).
- Insurance Task Force Human Genome News 5(2), 1 (July 1993).
- The Genetic Privacy Act Report written in 1995 by George Annas of the Boston University School of Public Health to assist legislators.
- HUGO Statement on Patenting of DNA Sequences (1995).
- The Einstein Institute for Science, Health & the Courts (EINSHAC).
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