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. 2002 Apr;110(Suppl 2):145–148. doi: 10.1289/ehp.02110s2145

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

Richard R Sharp 1, Morris W Foster 1
PMCID: PMC1241157  PMID: 11929722

Abstract

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.

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Selected References

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  1. 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. doi: 10.1016/S0140-6736(05)78066-1. [DOI] [PubMed] [Google Scholar]
  2. Carpenter D. O. Communicating with the public on issues of science and public health. Environ Health Perspect. 1995 Sep;103 (Suppl 6):127–130. doi: 10.1289/ehp.95103s6127. [DOI] [PMC free article] [PubMed] [Google Scholar]
  3. Davis D. S. Groups, communities, and contested identities in genetic research. Hastings Cent Rep. 2000 Nov-Dec;30(6):38–45. [PubMed] [Google Scholar]
  4. Emanuel E. J., Wendler D., Grady C. What makes clinical research ethical? JAMA. 2000 May 24;283(20):2701–2711. doi: 10.1001/jama.283.20.2701. [DOI] [PubMed] [Google Scholar]
  5. Foster M. W., Eisenbraun A. J., Carter T. H. Communal discourse as a supplement to informed consent for genetic research. Nat Genet. 1997 Nov;17(3):277–279. doi: 10.1038/ng1197-277. [DOI] [PubMed] [Google Scholar]
  6. Foster M. W., Sharp R. R., Freeman W. L., Chino M., Bernsten D., Carter T. H. The role of community review in evaluating the risks of human genetic variation research. Am J Hum Genet. 1999 Jun;64(6):1719–1727. doi: 10.1086/302415. [DOI] [PMC free article] [PubMed] [Google Scholar]
  7. Foster M. W., Sharp R. R. Genetic research and culturally specific risks: one size does not fit all. Trends Genet. 2000 Feb;16(2):93–95. doi: 10.1016/s0168-9525(99)01895-8. [DOI] [PubMed] [Google Scholar]
  8. Greely H. T. The control of genetic research: involving the "groups between". Houst Law Rev. 1997;33(5):1397–1430. [PubMed] [Google Scholar]
  9. Hunter D., Caporaso N. Informed consent in epidemiologic studies involving genetic markers. Epidemiology. 1997 Sep;8(5):596–599. [PubMed] [Google Scholar]
  10. Juengst E. T. Group identity and human diversity: keeping biology straight from culture. Am J Hum Genet. 1998 Sep;63(3):673–677. doi: 10.1086/302032. [DOI] [PMC free article] [PubMed] [Google Scholar]
  11. 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. doi: 10.1353/ken.1998.0010. [DOI] [PubMed] [Google Scholar]
  12. Kegley J. A. Using genetic information: the individual and the community. Med Law. 1996;15(3):377–389. [PubMed] [Google Scholar]
  13. Macaulay A. C., Delormier T., McComber A. M., Cross E. J., Potvin L. P., Paradis G., Kirby R. L., 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. doi: 10.1007/BF03404399. [DOI] [PMC free article] [PubMed] [Google Scholar]
  14. Reilly P. R., Page D. C. We're off to see the genome. Nat Genet. 1998 Sep;20(1):15–17. doi: 10.1038/1668. [DOI] [PubMed] [Google Scholar]
  15. Reilly P. R. Rethinking risks to human subjects in genetic research. Am J Hum Genet. 1998 Sep;63(3):682–685. doi: 10.1086/302028. [DOI] [PMC free article] [PubMed] [Google Scholar]
  16. Schell L. M., Tarbell A. M. 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. doi: 10.1289/ehp.98106833. [DOI] [PMC free article] [PubMed] [Google Scholar]
  17. Sharp R. R., Foster M. W. Involving study populations in the review of genetic research. J Law Med Ethics. 2000 Spring;28(1):41-51, 3. doi: 10.1111/j.1748-720x.2000.tb00315.x. [DOI] [PubMed] [Google Scholar]
  18. Soskolne C. L. Ethical, social, and legal issues surrounding studies of susceptible populations and individuals. Environ Health Perspect. 1997 Jun;105 (Suppl 4):837–841. doi: 10.1289/ehp.97105s4837. [DOI] [PMC free article] [PubMed] [Google Scholar]
  19. Struewing J. P., Hartge P., Wacholder S., Baker S. M., Berlin M., McAdams M., Timmerman M. M., Brody L. C., Tucker M. A. 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. doi: 10.1056/NEJM199705153362001. [DOI] [PubMed] [Google Scholar]
  20. Weijer C., Goldsand G., Emanuel E. J. Protecting communities in research: current guidelines and limits of extrapolation. Nat Genet. 1999 Nov;23(3):275–280. doi: 10.1038/15455. [DOI] [PubMed] [Google Scholar]
  21. Weijer C. Protecting communities in research: philosophical and pragmatic challenges. Camb Q Healthc Ethics. 1999 Fall;8(4):501–513. doi: 10.1017/s0963180199004120. [DOI] [PubMed] [Google Scholar]
  22. Wilcox A. J., Taylor J. A., Sharp R. R., London S. J. Genetic determinism and the overprotection of human subjects. Nat Genet. 1999 Apr;21(4):362–362. doi: 10.1038/7692. [DOI] [PubMed] [Google Scholar]

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