DNA data sharing: research participants' perspectives.

DNA data sharing: research participants' perspectives. Research Abstract Details 

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DNA data sharing: research participants' perspectives. Abstract Text:

Amy L McGuire,Jennifer A Hamilton,Rebecca Lunstroth,Laurence B McCullough,Alica Goldman,Amy L McGuire,Jennifer A Hamilton,Rebecca Lunstroth,Laurence B McCullough,Alica Goldman,

PURPOSE: Current genomic research policy calls for public data release with specific consent for data sharing. Because most clinical investigators are not responsible for and do not anticipate data broadcast few include information about data sharing in their informed consent process. Model language is therefore urgently needed and should be responsive to research participants' attitudes and judgments. The purpose of this study was to describe research participants' attitudes and judgments about data release and their preferences for varying levels of control over decision-making. METHODS: Focus group sessions with patients and controls from a genetic study of epilepsy. RESULTS: Despite wide variation in judgments, there was general interest in receiving information and making decisions about data sharing. Participants preferred multiple data sharing options, but were more likely to consent to public data release when given fewer options. For existing samples most participants felt that genomic information should not be publicly released without explicit consent from research participants. CONCLUSIONS: Specific information about data sharing ought to be included in the consent process for all genetic research. These participants desire multiple data release options, but the effect, if any, on consent to public release deserves further investigation.

DNA data sharing: research participants' perspectives. Publishing Authors By Initials

AL McGuire,JA Hamilton,R Lunstroth,LB McCullough,A Goldman,AL McGuire,JA Hamilton,R Lunstroth,LB McCullough,A Goldman,

For similar persons: research subjects research abstracts see: persons: research subjects research

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DNA data sharing: research participants' perspectives. Journal Published:

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

Journal: Genetics in medicine : official journal of the Ame

VOLUME: 10

Page Numbers: 46-53

Journal Abbreviation: Genet. Med.

ISSN: 1530-0366

DAY: 19

MONTH: Jan

YEAR: 2008

DNA data sharing: research participants' perspectives. Information

Number of References:

LANGUAGE: eng

NlmUniqueID: 9815831

DNA data sharing: research participants' perspectives. Keywords Mesh Terms:

KEYWORDS: Research Subjects

MESH TERMS: genetics

Chemical & Substance for Abstract: DNA data sharing: research participants' perspectives. Information

Substance Name: DNA

Registry Number: 9007-49-2

Grant and Affiliation Information for DNA data sharing: research participants' perspectives.

AFFILIATION: Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas 77030, USA. amcguire@bcm.edu

Country: United States

AGENCY: United States NHGRI

GRANT: R01 HG004333-01

ACRONYM: HG

MEDLINETA: Genet Med

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