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Consent for genetic research in the Framingham Heart Study.

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Author(s)
Levy, Daniel
Splansky, Greta Lee
Strand, Nicolle K.
Atwood, Larry D.
Benjamin, Emelia J.
Blease, Susan
Cupples, L Adrienne
D'Agostino, Ralph B., Sr.
Fox, Caroline S.
Kelly-Hayes, Margaret
Koski, Greg
Larson, Martin G.
Mutalik, Karen M.
Oberacker, Eliz
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Keywords
Communication
Consent
Disease
DNA
Freedom
Genes
Genetic Information
Genetic Research
Genome
Genome-wide Association Studies
Investigators
Research
Snps
Trust
Genetics, Molecular Biology and Microbiology
Informed Consent
Health Care for Particular Diseases or Groups
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URI
http://hdl.handle.net/20.500.12424/138810
Online Access
http://xr8el9yb8v.search.serialssolutions.com/?version=1.0&url_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&atitle=Consent+for+genetic+research+in+the+Framingham+Heart+Study.&title=American+journal+of+medical+genetics.+Part+A&volume=152A&issue=5&date=20100500&au=Levy,+Daniel;+Splansky,+Greta+Lee;+Strand,+Nicolle+K;+Atwood,+Larry+D;+Benjamin,+Emelia+J;+Blease,+Susan;+Cupples,+L+Adrienne;+D'Agostino,+Ralph+B+Sr.;+Fox,+Caroline+S;+Kelly-Hayes,+Margaret;+Koski,+Greg;+Larson,+Martin+G;+Mutalik,+Karen+M;+Oberacker,+Eliz
https://dx.doi.org/10.1002/ajmg.a.33377
http://hdl.handle.net/10822/515578
Abstract
Extensive efforts have been aimed at understanding the genetic underpinnings of complex diseases that affect humans. Numerous genome-wide association studies have assessed the association of genes with human disease, including the Framingham Heart Study (FHS), which genotyped 550,000 SNPs in 9,000 participants. The success of such efforts requires high rates of consent by participants, which is dependent on ethical oversight, communications, and trust between research participants and investigators. To study this we calculated percentages of participants who consented to collection of DNA and to various uses of their genetic information in two FHS cohorts between 2002 and 2009. The data included rates of consent for providing a DNA sample, creating an immortalized cell line, conducting research on various genetic conditions including those that might be considered sensitive, and for notifying participants of clinically significant genetic findings were above 95%. Only with regard to granting permission to share DNA or genetic findings with for-profit companies was the consent rate below 95%. We concluded that the FHS has maintained high rates of retention and consent for genetic research that has provided the scientific freedom to establish collaborations and address a broad range of research questions. We speculate that our high rates of consent have been achieved by establishing frequent and open communications with participants that highlight extensive oversight procedures. Our approach to maintaining high consent rates via ethical oversight of genetic research and communication with study participants is summarized in this report and should be of help to other studies engaged in similar types of research. Published 2010 Wiley-Liss, Inc.
Date
2011-07-12
Identifier
oai:repository.library.georgetown.edu:10822/515578
1552-4833
10.1002/ajmg.a.33377
American journal of medical genetics. Part A 2010 May ; 152A(5): 1250-6
http://xr8el9yb8v.search.serialssolutions.com/?version=1.0&url_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&atitle=Consent+for+genetic+research+in+the+Framingham+Heart+Study.&title=American+journal+of+medical+genetics.+Part+A&volume=152A&issue=5&date=20100500&au=Levy,+Daniel;+Splansky,+Greta+Lee;+Strand,+Nicolle+K;+Atwood,+Larry+D;+Benjamin,+Emelia+J;+Blease,+Susan;+Cupples,+L+Adrienne;+D'Agostino,+Ralph+B+Sr.;+Fox,+Caroline+S;+Kelly-Hayes,+Margaret;+Koski,+Greg;+Larson,+Martin+G;+Mutalik,+Karen+M;+Oberacker,+Eliz
http://dx.doi.org/10.1002/ajmg.a.33377
http://hdl.handle.net/10822/515578
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Research Ethics by Disciplines

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