Sample genetic policy language for research conducted with native communities

J Cancer Educ. Spring 2005;20(1 Suppl):52-7. doi: 10.1207/s15430154jce2001s_12.

Abstract

Background: [corrected] We have been repeatedly asked to clarify genetic issues that have cultural ramifications for Native communities.

Method: In the following commentary, we explain selected genetic issues that may vary among tribal nations; nonetheless, scientists should allocate sufficient time to meet with the tribal leaders and/or members of the tribal institutional review board prior to designing a genetic study to learn how selected issues are perceived by that specific tribal nation.

Results: Tribal nations generally encourage and mandate community-based participatory research methodology.

Conclusions: We have included in this commentary draft language for study protocols to support researchers and tribal nations when developing studies pertaining to genetic issues.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Communication
  • Community Participation / methods*
  • Cultural Characteristics
  • Genetic Research*
  • Genetic Testing / methods
  • Humans
  • Indians, North American*
  • Language*
  • Patents as Topic
  • Policy Making*
  • Specimen Handling / methods