Community involvement in the ethical review of genetic research: Lessons from American Indian and Alaska native populations

Richard R Sharp, Morris W. Foster

Research output: Contribution to journalArticle

68 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)145-148
Number of pages4
JournalEnvironmental Health Perspectives
Volume110
Issue numberSUPPL. 2
StatePublished - 2002
Externally publishedYes

Fingerprint

Ethical Review
Genetic Research
North American Indians
Research
Population
Research Personnel
Bioethics
Environmental Health
Community Participation
Alaska Natives
study method
Public Policy
Informed Consent
Practice Guidelines
Ethics
ethics
Research Design
Health

Keywords

  • Ethics
  • Indigenous populations
  • Informed consent
  • Participatory research
  • Research oversight

ASJC Scopus subject areas

  • Environmental Science(all)
  • Environmental Chemistry
  • Public Health, Environmental and Occupational Health

Cite this

Community involvement in the ethical review of genetic research : Lessons from American Indian and Alaska native populations. / Sharp, Richard R; Foster, Morris W.

In: Environmental Health Perspectives, Vol. 110, No. SUPPL. 2, 2002, p. 145-148.

Research output: Contribution to journalArticle

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