Native Hawaiian preferences for informed consent and disclosure of results from genetic research.

Fong, M., Braun, K., & Chang, M. (2006). Native Hawaiian preferences for informed consent and disclosure of results from genetic research. Journal of Cancer Education, 21(Suppl.): S47-S52. CONTACT kbraun@hawaii.edu

Background.  Informed consent is generally waived when using stored specimens that are anonymous/anonymized, in research, because individual harm is minimal; however, group harm may arise if specimens contain ethnic identifiers.

Methods.  We assessed preferences for informed consent and disclosure of results from genetic research through a survey (n = 429, 83.2% Native Hawaiian).

Results.  Native Hawaiians were more likely than non-Hawaiians to require informed consent for genetic research using personally identified (81% vs. 77.8%), anonymous (40.9% vs. 34.7%), and ethnically identified specimens (51.3% vs. 33.3%).  Most respondents wanted results reported to them (87.6%) and to their physicians (79.0%).

Conclusions.  Recognizing community preferences for informed consent and disclosure of research results may alleviate concerns about group harms inherent in genetic research.