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The U.S. Department of Energy (DOE) and the National Institutes of Health (NIH) devoted 3% to 5% of their annual Human Genome Program budgets toward studying the ethical, legal, and social issues (ELSI) 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

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 health care 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.

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

• U.S. DOE HGP Projects in Ethical, Legal, and Social Issues
• 2001 ELSI grants
• 2000 ELSI grants
• 1999 booklet
• 1998 booklet
• 1997 booklet
• Abstracts from DOE Human Genome Program Contractor-Grantee Workshops
• 2002 ELSI abstracts from Workshop IX
• 2000 ELSI abstracts from Workshop VIII
• 1999 ELSI abstracts from Workshop VII
• 1997 ELSI abstracts fromWorkshop VI
• 1996 ELSI abstracts from Workshop V
• 1994 ELSI abstracts from Workshop IV
• Abstracts from U.S. DOE Human Genome Program Reports
• ELSI abstracts from 1997 Program Report
• ELSI abstracts from the 1993 Program Report
• Five Years of Progress in the Human Genome Project: Ethical, Legal, and Social Implications (December 1995)

Some Products of ELSI Research

• Retrospective of the DOE ELSI Program (1990-2000): A history of the program. New specific ELSI grants and their products (1990-2001). For a printer-friendly version of these grants click here.
• 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; also available as an Acrobat (pdf) file. Visit Adobe for free Acrobat Reader software.
• To Know Ourselves: An overview of the underlying science of the Human Genome Project; also available in Adobe Acrobat format.
• ELSI Bibliography (list of publications prior to 1995).
• Evaluating Gene Testing: A brief guide to current gene tests.
• 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.
• Electronic Scholarly Publishing: Classic Papers in Genetics
• Public Sector Genetic Services in Florida and Georgia. Current Status and Potential Issues Raised by the Human Genome Project: The effects of 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).
• Documents from the Secretary's Advisory Committee on Genetic Testing.
• Insurance Task Force (summary 1993).
• The Genetic Privacy Act and Commentary.
• HUGO Statement on Patenting of DNA Sequences (1995)
• The Einstein Institute for Science, Health & the Courts
• Scientists needed to serve as expert witnesses. Contact Franklin Zweig at einshac@intr.net or 301/280-5949, Fax: 503/212-9227

Related Articles from Human Genome News

• Ethical, Legal, and Social Issues
• Education

NIH and Other Research

• NIH Grant Listings
• NIH ELSI Home Page

Other Pages on This Web Site

• Ethical, Legal, and Social Issues of the Human Genome Project --a suite of webpages dedicated to the different issues associated with ELSI research
• Education
• Publications including DOE Human Genome Program research progress reports and workshop reports
• Links to other ELSI web sites