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.
Fong
Megan
M
Imi Hale-Native Hawaiian Cancer Awareness, Research, and Training Network, Program of Papa Ola Lokahi, Honolulu, HI 96813, USA. meganf@hawaii.edu
Braun
Kathryn L
KL
Chang
R Mei-Ling
RM
D000293:Adolescent; D000328:Adult; D000368:Aged; D003258:Consumer Behavior / Q000706:statistics & numerical data; D030881:Disclosure / Q000706:statistics & numerical data; D005260:Female; D036281:Genetic Research; D006254:Hawaii / Q000208:ethnology; D006801:Humans; D033181:Information Dissemination; D007258:Informed Consent / Q000706:statistics & numerical data; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D011795:Surveys and Questionnaires