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

Background: Informed consent is generally waived when using anonymous stored specimens 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.