ELSI Research Programme of the NHGRI

Jean E McEwen, National Human Genome Research Institute, Bethesda, Maryland, USA
Elizabeth J Thomson, National Human Genome Research Institute, Bethesda, Maryland, USA
Joy T Boyer, National Human Genome Research Institute, Bethesda, Maryland, USA

Published online: December 2009

DOI: 10.1002/9780470015902.a0005181.pub2

The Ethical, Legal and Social Implications (ELSI) research programme of the National Human Genome Research Institute (NHGRI) of the National Institutes of Health (NIH) is a grant programme that supports research designed to anticipate and address the implications of human genetics and genomics research for individuals, families, communities and society. Programme staff and the researchers the programme supports are involved in the bioethics components of major genomics research projects and in many activities that inform genomics-related research, health and social policies. The programme operates collaboratively with the genomics research community, and in general, the supported research has brought greater depth and strength to the genomics research enterprise. The ELSI programme is a unique experiment in the annals of NIH-funded biomedical research, and initial results indicate that the experiment has been successful.

Key concepts:

  • The Ethical, Legal and Social Implications (ELSI) research programme, within the Division of Extramural Research at the National Human Genome Research Institute of the National Institutes of Health, supports research designed to anticipate and address the implications of human genetic and genomic research, technologies and information.
  • The ELSI programme is currently the largest governmental supporter of bioethics research in the world.
  • Most ELSI research is investigator-initiated, but the programme periodically issues requests for applications (RFAs) to solicit research targeted at particular high-priority areas.
  • Neither genomics researchers nor administrators responsible for the oversight of genomics research have controlled the content or direction of ELSI research.
  • The research priorities of the ELSI programme have evolved and span a range of issues relating to the implications of genomics for individuals, families, communities and the broader society.
  • ELSI research aims to be anticipatory by encouraging researchers to identify issues likely to be raised by advances in genetics and genomics research before they arise.
  • ELSI research involves researchers from a wide range of disciplines and is often highly transdisciplinary.
  • The involvement of ELSI programme staff and ELSI researchers in major genomics research projects makes it possible to marshal the findings of relevant ELSI studies directly to inform the design and conduct of genomics research.
  • ELSI research has had a considerable impact on both health care and broader social policies.

Keywords: ethics; bioethics; policy; genomics; ELSI

 References
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    book ELSI Research Planning and Evaluation Group (ERPEG) (2000) A Review and Analysis of the Ethical, Legal, and Social Implications (ELSI) Research Programs at the National Institutes of Health and the Department of Energy, NIH Publication No. 00-4867. Bethesda, MD: National Institutes of Health, US Department of Health and Human Services.
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    ePath National Human Genome Research Institute (1996) NHGRI-DOE Guidance on Human Subjects Issues in Large-Scale DNA Sequencing. http://www.genome.gov/page.cfm?pageID=10000921
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    ePath NIH News Release (2006) NHGRI Launches Centers for Excellence in Ethical, Legal and Social Implications Research. http://www.genome.gov/12512375
    ePath Office of Human Research Protections (OHRP) (2004) Guidance on Research Involving Coded Private Information or Biological Specimens. http://www.hhs.gov/ohrp/humansubjects/guidance/cdebiol04.htm
    ePath PA-08-012, ELSI Regular Research Program (2007). http://grants.nih.gov/grants/guide/pa-files/PA-08-012.html
    ePath PA-08-013, ELSI Small Grant Research Grant Program (2007). http://grants.nih.gov/grants/guide/pa-files/PA-08-013.html
    ePath RFA-HG-06-008 (2006) Public Consultation to Inform the Design of Possible Large-Scale Studies of Genes and Environment in Common Disease. http://grants.nih.gov/grants/guide/rfa-files/RFA-HG-06-008.html
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 Further Reading
    American Society of Law, Medicine and Ethics (2001) A decade of ELSI research: a celebration of the first ten years of the Ethical, Legal, and Social Implications (ELSI) Programs. Journal of Law, Medicine and Ethics. Special Supplement 29(2) [Abstracts from conference proceedings].
    book Annas GJ and Elias S (1992) "Social policy research priorities for the Human Genome Project". In: Annas GJ and Elias S (eds) Gene Mapping: Using Law and Ethics as Guides, pp. 269–275. New York: Oxford University Press.
    Emanuel E (2008) The NIH and bioethics: what should be done? Academic Medicine 83(6): 529–531.
    Juengst ET (1994) Human genome research and the public interest: progress notes from an American science policy experiment. American Journal of Human Genetics 54: 121–128.
    book Murray TH (1992) "Speaking unsmooth things about the Human Genome Project". In: Annas GJ and Elias S (eds) Gene Mapping: Using Law and Ethics as Guides, pp. 276–294. New York: Oxford University Press.
    book Smith E and Sapp W (1997) Plain Talk about the Human Genome Project: A Tuskegee University Conference on its Promise and Perils and Matters of Race. Tuskegee: Tuskegee University.
    book US Human Genome Project (1990) Understanding Our Genetic Inheritance: The US Human Genome Project, The First Five Years: Fiscal Years 1991–1995, NIH Publication no. 90-1590. Bethesda, MD: National Institutes of Health.

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Article Title: ELSI Research Programme of the NHGRI
 
How to Cite close
McEwen, Jean E, Thomson, Elizabeth J, and Boyer, Joy T(Dec 2009) ELSI Research Programme of the NHGRI. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005181.pub2]