title: Native Hawaiian preferences for informed consent and disclosure of results from genetic research.
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.
authors.affiliation: Imi Hale-Native Hawaiian Cancer Awareness, Research, and Training Network, Program of Papa Ola Lokahi, Honolulu, HI 96813, USA. meganf@hawaii.edu
authors.forename: Megan
authors.initials: M
authors.lastname: Fong
authors.forename: Kathryn L
authors.initials: KL
authors.lastname: Braun
authors.forename: R Mei-Ling
authors.initials: RM
authors.lastname: Chang
mesh_terms: 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