Native Hawaiian Preferences for Informed Consent and Disclosure of Results From Genetic Research
Authors:
- Megan FongMFMegan Fong
- Kathryn L. BraunKBKathryn L. Braun
- R. Mei-Ling ChangRCR. Mei-Ling Chang
- 1 March 2006
- journal article
- Published by Springer Nature in Journal of Cancer Education
- Vol. 21 (1, suppl) , S47-S52
Abstract
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. We assessed preferences for informed consent and disclosure of results from genetic research through a survey (N = 429, 83.2% Native Hawaiian). 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%). Recognizing community preferences for informed consent and disclosure of research results may alleviate concerns about group harms inherent in genetic research.Keywords
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