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ELSI Research Program

The Ethical, Legal and Social Implications (ELSI) Research Program

ELSI Research Program ELSI Planning and Evaluation History ELSI  Abstracts and Activities Database ELSI Grant Publications and Products ELSI Program Reports

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ELSI Research Program Overview

The National Human Genome Research Institute's (NHGRI) Ethical, Legal and Social Implications (ELSI) Research Program was established in 1990 as an integral part of the Human Genome Project (HGP) to foster basic and applied research on the ethical, legal and social implications of genetic and genomic research for individuals, families and communities. The ELSI Research Program funds and manages studies, and supports workshops, research consortia and policy conferences related to these topics.

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ELSI Research Program Priorities

The following ELSI research areas have been identified as "grand challenges" for the future of genomic research. The grand challenges are described in detail in A Vision for the Future of Genomics Research [nature.com], (Nature, 422:835-847. 2003).

  • Intellectual Property Issues Surrounding Access to and Use of Genetic Information (Grand Challenge I-3). Projects in this area examine the impact that laws, regulations, and practices in the area of intellectual property have on both the development and commercialization of genomic technologies and derived products and the access to and use of such technologies and information by both researchers and the public.

  • Ethical, Legal and Social Factors that Influence the Translation of Genetic Information to Improved Human Health (Grand Challenges II-5, II-6 and III-1) Projects in this area address issues of access to and use of new genetic information and technologies to improve human health.

  • Issues Surrounding the Conduct of Genetic Research (Grand Challenge III-1). Projects in this area explore ethical ways to conduct cutting edge genetic and genomic research that involves human participants.

  • Issues Surrounding the Use of Genetic Information and Technologies in non-Health Care Settings (Grand Challenge III-1 and III-3). Projects in this area examine the ethical, legal and social implications of using genetic information and technologies in non-health care settings, such as employment, insurance, education, adoption, criminal justice, or civil litigation.

  • The Impact of Genomics on Concepts of Race, Ethnicity, Kinship and Individual and Group Identity (Grand Challenge III-2). These projects examine the complex historical, social and psychological contexts of genomics-derived data as it relates to concepts of race, ethnicity, kinship and identity.

  • The Implications, for Both Individuals and Society, of Uncovering Genomic Contributions to Human Traits and Behaviors (Grand Challenge III-3). Research in this area explores the implications of the discovery of genetic contributions related to diseases, non-disease attributes, and various behavioral traits such as as cognition, mental illness, diurnal rhythms, and aging for how we understand health and illness.

  • How Different Individuals, Cultures and Religious Traditions View the Ethical Boundaries for the Uses of Genomics (Grand Challenge III-4). Research in this area explores how different individuals, cultures and religious traditions view the use of genomics.

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ELSI Research Funding Opportunities

ELSI Research Program Announcements (PA)

The NHGRI, along with several other National Institutes of Health (NIH) institutes, has released revised general program announcements to solicit research projects that anticipate, analyze, and address the ethical, legal, and social implications of the discovery of new genetic technologies and the availability and use of genetic information resulting from human genetics and genomic research.

PA-08-012 [grants.nih.gov] Ethical, Legal and Social Implications (ELSI) Regular Research Program (R01)
Application Receipt Date: Standard dates apply. Expiration Date: January 8, 2011

PA-08-013 [grants.nih.gov] Ethical, Legal and Social Implications (ELSI) Regular Research Program (R03)
Application Receipt Date: Standard dates apply. Expiration Date: January 8, 2011

NIH-Wide Ethical Issues in Human Subjects Research Program Announcements

The NHGRI participates in the NIH-wide program announcments on human subjects research issues.

PA-07-277 [grants.nih.gov]: Research On Ethical Issues In Human Subjects Research (R01)
Application Receipt Dates: See program announcement

  • NOT-HG-07-002 [grants1.nih.gov]: Research on Ethical Issues in Human Subjects Research - Clarification for Prospective Applications to the National Human Genome Research Institute, NIH
  • NOT-HG-07-002 [grants1.nih.gov]: Extension of Expiration Date for PA-07-277, PA-06-368, PA-06-367

PA-06-368 [grants.nih.gov]: Research On Ethical Issues In Human Subjects Research (R21)
Application Receipt Dates: See program announcement

PA-06-367 [grants.nih.gov]: Research On Ethical Issues In Human Subjects Research (R03)
Application Receipt Dates: See program announcement

Other Research Funding Opportunities

The ELSI program also participates in a number of related research grant opportunities, and time limited requests for applications.

PA-07-045 [grants.nih.gov]: Social and Cultural Dimensions of Health
Application Receipt Dates: See program announcement

PAS-07-381 [grants.nih.gov]:  Advancing Novel Science in Women’s Health Research (ANSWHR)(R21)

PAS-07-382 [grants.nih.gov]:  Advancing Novel Science in Women’s Health Research (ANSWHR)(R03)

ELSI Conference Grants

The NHGRI ELSI Program accepts Conference Grant (R13) applications. For specific instructions for preparing a conference grant application, see:

PA-08-149 [grants.nih.gov]: NIH Support for Conferences and Scientific Meetings (R13/U13)
Application Receipt Dates: See program announcement

ELSI Training and Career Development Funding Opportunities

The ELSI program participates in a number of training and career development funding opportunities.

Pre- and Post-Doctoral Training Opportunities

PA-09-209 [grants1.nih.gov]: Ruth L. Kirschstein National Research Service Awards for Individual Predoctoral Fellowships to Promote Diversity in Health-Related Research (F31)
Expiration Date: September 8, 2012

PA-09-210 [grants.nih.gov]: Ruth L. Kirschstein National Research Service Awards (NRSA) for Individual Postdoctoral Fellows (F32)
Expiration Date: September 8, 2012

PA-09-211 [grants.nih.gov]: Ruth L. Kirschstein National Research Service Awards (NRSA) for Individual Senior Fellows (F33)
Expiration Date: September 8, 2012

Career Development Opportunities

PA-09-036 [grants.nih.gov]: NIH Pathway to Independence (PI) Award (K99/R00)
Expiration Date: January 8, 2012

PA-08-190 [grants.nih.gov]: Research Supplements to Promote Diversity in Health-Related Research
Expiration Date: September 30, 2011

PA-08-191 [grants.nih.gov]: Supplements to Promote Reentry into Biomedical and Behavioral Research Careers
Expiration Date: September 30, 2011

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Centers of Excellence in ELSI Research

In the Fall of 2003, the NHGRI in collaboration with U.S. Department of Energy (DOE) and the National Institute of Child Health and Human Development (NICHD) launched a new initiative to create interdisciplinary Centers of Excellence in ELSI Research (CEER). The CEERs are designed to bring investigators from multiple disciplines together to work in innovative ways to address important new, or particularly persistent, ethical, legal, and social issues related to advances in genetics and genomics. In addition, the centers will support the growth of the next generation of researchers on the ethical, legal and social implications of genomic research. Special efforts will be made to recruit potential researchers from under-represented groups.

For more information about the CEER's program, see: Centers of Excellence in ELSI Research (CEER).

In August 2004, four full centers and three exploratory centers were funded. In September 2007, two additional full centers were funded. More information on each of these centers and links to the center homepages, research focus, faculty, and publications are available at: CEER Awarded Grants

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ELSI Research Program Staff

Law; Social Policy; Genetic Variation in Complex Traits & Behavioral Genetics
Program Director
Jean McEwen, J.D., Ph.D.
E-mail: mcewenj@mail.nih.gov

Clinical Genetics; Research Ethics; Community Research
Program Director
Elizabeth Thomson, R.N., M.S., D.N.Sc., C.G.C., F.A.A.N.
E-mail: thomsone@mail.nih.gov

Genetics & the Humanities; ELSI Training
Senior Program Analyst
Joy Boyer
E-mail: boyerj@exchange.nih.gov

Address
The Ethical, Legal and Social Implications Research Program
National Human Genome Research Institute
National Institutes of Health
5635 Fishers Lane
Suite 4076, MSC 9305
Bethesda, MD 20892-9305

Phone: (301) 402-4997
Fax: (301) 402-1950
E-mail: elsi@nhgri.nih.gov

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Last Updated: November 6, 2009