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

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

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

Megan Fong,Kathryn L Braun,R Mei-Ling Chang,

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.

Native Hawaiian preferences for informed consent and disclosure of results from genetic research. Publishing Authors By Initials

M Fong,KL Braun,RM Chang,

For similar investigative techniques: epidemiologic methods: data collection: questionnaires research abstracts see: investigative techniques: epidemiologic methods: data collection: questionnaires research

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

PUBLICATION TYPE: Research Support, Non-U.S. Gov

Journal: Journal of cancer education : the official journal

VOLUME: 21

Page Numbers: S47-52

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ISSN: 0885-8195

DAY: 3

MONTH: 12

YEAR: 2006

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

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LANGUAGE: eng

NlmUniqueID: 8610343

Native Hawaiian preferences for informed consent and disclosure of results from genetic research. Keywords Mesh Terms:

KEYWORDS: Questionnaires

MESH TERMS: statistics & numerical data

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

AFFILIATION: Imi Hale-Native Hawaiian Cancer Awareness, Research, and Training Network, Program of Papa Ola Lokahi, Honolulu, HI 96813, USA. meganf@hawaii.edu

Country: United States

AGENCY: United States NCI

GRANT: 3-R25-CA83646-03S1

ACRONYM: CA

MEDLINETA: J Cancer Educ

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