Logo of envhperEnvironmental Health PerspectivesBrowse ArticlesAbout EHPGeneral InformationAuthorsMediaProgramsPartnerships
Environ Health Perspect. 2002 Apr; 110(Suppl 2): 145–148.
PMCID: PMC1241157
Research Article

Community involvement in the ethical review of genetic research: lessons from American Indian and Alaska Native populations.


The National Bioethics Advisory Commission has proposed that regulatory oversight for research with human subjects be extended beyond the protection of individual research participants to include the protection of social groups. To accomplish this, the commission recommends that investigators and ethics review boards a) work directly with community representatives to develop study methods that minimize potential group harms, b) discuss group implications as part of the informed consent process, and c) consider group harms in reporting research results. We examine the utility of these recommendations in the context of research with American Indian and Alaska Native communities. Because much attention has been given to the question of how best to consult with members of these communities in the design and conduct of research, we believe it behooves investigators to consider the lessons to be learned from research involving American Indians and Alaska Natives. After describing several difficulties surrounding the application of the commission's approach to these research contexts, we propose a research agenda to develop best practices for working with local communities in the ethical assessment of epidemiologic and environmental health research.

Full Text

The Full Text of this article is available as a PDF (499K).

Selected References

These references are in PubMed. This may not be the complete list of references from this article.
  • Wilcox AJ, Taylor JA, Sharp RR, London SJ. Genetic determinism and the overprotection of human subjects. Nat Genet. 1999 Apr;21(4):362–362. [PubMed]
  • Hunter D, Caporaso N. Informed consent in epidemiologic studies involving genetic markers. Epidemiology. 1997 Sep;8(5):596–599. [PubMed]
  • Sharp RR, Foster MW. Involving study populations in the review of genetic research. J Law Med Ethics. 2000 Spring;28(1):41–3. [PubMed]
  • Kegley JA. Using genetic information: the individual and the community. Med Law. 1996;15(3):377–389. [PubMed]
  • Struewing JP, Hartge P, Wacholder S, Baker SM, Berlin M, McAdams M, Timmerman MM, Brody LC, Tucker MA. The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews. N Engl J Med. 1997 May 15;336(20):1401–1408. [PubMed]
  • Soskolne CL. Ethical, social, and legal issues surrounding studies of susceptible populations and individuals. Environ Health Perspect. 1997 Jun;105 (Suppl 4):837–841. [PMC free article] [PubMed]
  • Foster MW, Sharp RR, Freeman WL, Chino M, Bernsten D, Carter TH. The role of community review in evaluating the risks of human genetic variation research. Am J Hum Genet. 1999 Jun;64(6):1719–1727. [PMC free article] [PubMed]
  • Greely HT. The control of genetic research: involving the "groups between". Houst Law Rev. 1997;33(5):1397–1430. [PubMed]
  • Weijer C, Goldsand G, Emanuel EJ. Protecting communities in research: current guidelines and limits of extrapolation. Nat Genet. 1999 Nov;23(3):275–280. [PubMed]
  • Juengst Eric T. Groups as gatekeepers to genomic research: conceptually confusing, morally hazardous, and practically useless. Kennedy Inst Ethics J. 1998 Jun;8(2):183–200. [PubMed]
  • Reilly PR, Page DC. We're off to see the genome. Nat Genet. 1998 Sep;20(1):15–17. [PubMed]
  • Foster MW, Eisenbraun AJ, Carter TH. Communal discourse as a supplement to informed consent for genetic research. Nat Genet. 1997 Nov;17(3):277–279. [PubMed]
  • Emanuel EJ, Wendler D, Grady C. What makes clinical research ethical? JAMA. 2000 May 24;283(20):2701–2711. [PubMed]
  • Weijer C. Protecting communities in research: philosophical and pragmatic challenges. Camb Q Healthc Ethics. 1999 Fall;8(4):501–513. [PubMed]
  • Macaulay AC, Delormier T, McComber AM, Cross EJ, Potvin LP, Paradis G, Kirby RL, Saad-Haddad C, Desrosiers S. Participatory research with native community of Kahnawake creates innovative Code of Research Ethics. Can J Public Health. 1998 Mar-Apr;89(2):105–108. [PubMed]
  • Schell LM, Tarbell AM. A partnership study of PCBs and the health of Mohawk youth: lessons from our past and guidelines for our future. Environ Health Perspect. 1998 Jun;106 (Suppl 3):833–840. [PMC free article] [PubMed]
  • Carpenter DO. Communicating with the public on issues of science and public health. Environ Health Perspect. 1995 Sep;103 (Suppl 6):127–130. [PMC free article] [PubMed]
  • Reilly PR. Rethinking risks to human subjects in genetic research. Am J Hum Genet. 1998 Sep;63(3):682–685. [PMC free article] [PubMed]
  • Juengst ET. Group identity and human diversity: keeping biology straight from culture. Am J Hum Genet. 1998 Sep;63(3):673–677. [PMC free article] [PubMed]
  • Davis DS. Groups, communities, and contested identities in genetic research. Hastings Cent Rep. 2000 Nov-Dec;30(6):38–45. [PubMed]
  • Foster MW, Sharp RR. Genetic research and culturally specific risks: one size does not fit all. Trends Genet. 2000 Feb;16(2):93–95. [PubMed]
  • Andrews L, Nelkin D. Whose body is it anyway? Disputes over body tissue in a biotechnology age. Lancet. 1998 Jan 3;351(9095):53–57. [PubMed]

Articles from Environmental Health Perspectives are provided here courtesy of National Institute of Environmental Health Science


Save items

Related citations in PubMed

See reviews...See all...

Cited by other articles in PMC

See all...


  • Cited in Books
    Cited in Books
    NCBI Bookshelf books that cite the current articles.
  • PubMed
    PubMed citations for these articles

Recent Activity

Your browsing activity is empty.

Activity recording is turned off.

Turn recording back on

See more...