Megan Fong1, Kathryn L Braun, R Mei-Ling Chang. 1. Imi Hale-Native Hawaiian Cancer Awareness, Research, and Training Network, Program of Papa Ola Lokahi, Honolulu, HI 96813, USA. meganf@hawaii.edu
Abstract
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.
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.
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