Ethical, Legal and Social Implications Research Program
The ELSI Research Program fosters 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. For a more in depth exploration of the program, read The Ethical, Legal and Social Implications Program of the National Human Genome Research Institute: Reflections on an Ongoing Experiment.
The NHGRI Division of Genomics and Society has identified the following three research domains to be considered for support by the Ethical, Legal and Social Implications (ELSI) Research Program. The domains are overlapping, and it is anticipated that many research projects will address issues that cut across domains. A more detailed discussion of these domains and a list of examples of possible research topics is available at ELSI Research Domains.
Genetic and Genomic Research. These projects may investigate and address the ethical, legal, social, and policy issues that arise in connection with the design and conduct of genetic and genomic research.
Genetic and Genomic Health Care. These projects may investigate and address the ethical, legal, social, and policy issues that arise in connection with the translation of genetic and genomic research into clinical medicine and health care in a variety of healthcare settings.
Broader Legal, Policy and Societal Issues. These projects may investigate and address a range of broader ethical, legal, policy and societal issues raised by the use of genetic and genomic technologies and information in research, clinical or non-medical settings.
Centers of Excellence in ELSI Research
The Centers of Excellence in ELSI Research 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.
News and Events
- ELSI Strategic Planning Webinar: Genomic Decision-Making: Power and Identity
July 9, 2019
- ELSI Strategic Planning Webinar: Appropriate Use and Implementation of Genomics in Diverse Communities
June 28, 2019
- ELSI Webinars March 13 and March 26, 2018
- The 4th ELSI Congress: Genomics and Society: Expanding the ELSI Universe
June 5-7, 2017
- Trans-NIH Workshop to Explore the Ethical, Legal and Social Implications (ELSI) of Citizen Science
January 13-14, 2015
- Follow-up Workshop to the Consensus Development Conference on Genetic Testing for CF (10/97)
- Promoting Safe and Effective Genetic Testing in the United States: Final Report of the Task Force on Genetic Testing (09/97)
- Genetic Testing for Cystic Fibrosis Consensus Development Conference Statement (04/97)
- NIH Workshop Statement - Reproductive Genetic Testing: Impact on Women (11/91)
- NIH Workshop Statement - Population Screening for the CF Gene (07/90)
Genetic Discrimination and Health Insurance
- Genetic Information and the Workplace (01/98)
- NIH-DOE ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and the Workplace(10/96)
- NIH-DOE ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and Health Insurance (07/95)
- Insurance Task Force Report--Executive Summary (05/93)
- Genetic Information and Health Insurance - Report of the Task Force on Genetic Information and Insurance (05/93)
Issues Related to the Conduct of Genetic Research
- Report of the First Community Consultation on the Responsible Collection and Use of Samples for Genetic Research (09/00)
- NCHGR/CDC Workshop on Informed Consent for Genetics Research Using Stored Tissue Samples (07/94)
- Protecting Human Research Subjects: 1993 OPRR IRB Guidebook Chapter on Human Genetic Research (1993)
- Report of the Working Group on Ethical, Legal, and Social Issues Related to Mapping and Sequencing the Human Genome (04/90)
- Summary of Grantees' Workshop on Strategies for Increasing the Number of Underrepresented Minorities Participating in Genomics and ELSI Research (11/01)
- Plan for Increasing the Number of Underrepresented Minorities Trained in Genomics and ELSI Research (2001)
Specific Research Topics
- Studying interactions Among Social, Behavioral & Genetic Factors in Health (10/01)
- Cancer Genetic Studies Consortium (1998)
- Hereditary Hemochromatosis: Gene Discovery and Policy Meeting (03/97)
- Report to the National Advisory Council for Human Genome Research (02/05)
- The Role of ELSI Research & Policy Activities in the NHGRI Plan (10/02)
- A Review and Analysis of the ELSI Research Programs at NIH and DOE (ERPEG Final Report) (02/00)
- Report of the Joint NIH/DOE Committee to Evaluate the Ethical, Legal and Social Implications Program of the Human Genome Project (12/96)
- Review of the ELSI Program: 1990-1995 (03/96)
- Scientific Program Analyst
- Division of Genome Sciences
- Program Analyst
- Division of Genome Sciences
- Program Assistant
- Division of Genomics and Society
Last updated: June 7, 2019