Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US

被引：165

作者：

Sanderson, Saskia C. ^{[1
,2
,3
]}

Brothers, Kyle B. ^{[4
]}

Mercaldo, Nathaniel D. ^{[5
]}

Clayton, Ellen Wright ^{[6
]}

Antommaria, Armand H. Matheny ^{[7
]}

Aufox, Sharon A. ^{[8
]}

Brilliant, Murray H. ^{[9
]}

Campos, Diego ^{[10
]}

Carrell, David S. ^{[11
]}

Connolly, John ^{[12
]}

Conway, Pat ^{[13
]}

Fullerton, Stephanie M. ^{[14
]}

Garrison, Nanibaa' A. ^{[15
,28
]}

Horowitz, Carol R. ^{[16
]}

Jarvik, Gail P. ^{[17
]}

Kaufman, David ^{[18
]}

Kitchner, Terrie E. ^{[9
]}

Li, Rongling ^{[19
]}

Ludman, Evette J. ^{[11
]}

McCarty, Catherine A. ^{[13
]}

McCormick, Jennifer B. ^{[20
]}

McManus, Valerie D. ^{[21
]}

Myers, Melanie F. ^{[22
,23
]}

Scro, Aaron ^{[11
]}

Williams, Janet L. ^{[24
]}

Shrubsole, Martha J. ^{[25
]}

Schildcrout, Jonathan S. ^{[5
]}

Smith, Maureen E. ^{[8
]}

Hom, Ingrid A. ^{[26
,27
]}

机构：

[1] UCL, Dept Behav Sci & Hlth, London WC1E 6BT, England

[2] Great Ormond St Hosp Sick Children, London WC1N 3JH, England

[3] Icahn Sch Med Mt Sinai, Dept Genet & Genom Sci, New York, NY 10029 USA

[4] Univ Louisville, Dept Pediat, Louisville, KY 40202 USA

[5] Vanderbilt Univ, Dept Biostat, Nashville, TN 37203 USA

[6] Vanderbilt Univ, Ctr Biomed Eth & Soc, Nashville, TN 37203 USA

[7] Cincinnati Childrens Hosp Med Ctr, Eth Ctr, Cincinnati, OH 45229 USA

[8] Northwestern Univ, Ctr Genet Med, Chicago, IL 60611 USA

[9] Marshfield Clin Res Fdn, Ctr Human Genet, Marshfield, WI 54449 USA

[10] Childrens Hosp Philadelphia, Dept Biomed & Hlth Informat, Philadelphia, PA 19104 USA

[11] Grp Hlth Res Inst, Seattle, WA 98101 USA

[12] Childrens Hosp Philadelphia, Ctr Appl Genom, Philadelphia, PA 19104 USA

[13] Essentia Inst Rural Hlth, Duluth, MN 55805 USA

[14] Univ Washington, Dept Bioeth & Humanities, Seattle, WA 98195 USA

[15] Seattle Childrens Res Inst, Treuman Katz Ctr Pediat Bioeth, Seattle, WA 98101 USA

[16] Icahn Sch Med Mt Sinai, Dept Populat Hlth Sci & Policy, New York, NY 10029 USA

[17] Univ Washington, Dept Genome Sci, Seattle, WA 98195 USA

[18] NHGRI, Div Genom & Soc, Bethesda, MD 20892 USA

[19] NHGRI, Div Genom Med, Bethesda, MD 20892 USA

[20] Mayo Clin, Biomed Eth Program, Rochester, MN 55905 USA

[21] Marshfield Clin Res Fdn, Biomed Informat Res Ctr, Marshfield, WI 54449 USA

[22] Cincinnati Childrens Hosp Med Ctr, Genet Counseling Grad Program, Cincinnati, OH 45229 USA

[23] Univ Cincinnati, Cincinnati, OH 45229 USA

[24] Geisinger Hlth Syst, Genom Med Inst, Danville, PA 17822 USA

[25] Vanderbilt Univ, Med Ctr, Vanderbilt Epidemiol Ctr, Nashville, TN 37203 USA

[26] Boston Childrens Hosp, Div Genet & Genom, Boston, MA 02115 USA

[27] Boston Childrens Hosp, Manton Ctr Orphan Dis Res, Boston, MA 02115 USA

[28] Univ Washington, Div Bioeth, Dept Pediat, Seattle, WA 98101 USA

来源：

AMERICAN JOURNAL OF HUMAN GENETICS | 2017年 / 100卷 / 03期

关键词：

GENOME-WIDE ASSOCIATION; RESEARCH PARTICIPANTS; BROAD CONSENT; INFORMED-CONSENT; PERSPECTIVES; INFORMATION; NANOTECHNOLOGY; PREFERENCES; POPULATION; TUSKEGEE;

D O I：

10.1016/j.ajhg.2017.01.021

中图分类号：

Q3 [遗传学];

学科分类号：

071007 ; 090102 ;

摘要：

Individuals participating in biobanks and other large research projects are increasingly asked to provide broad consent for open-ended research use and widespread sharing of their biosamples and data. We assessed willingness to participate in a biobank using different consent and data sharing models, hypothesizing that willingness would be higher under more restrictive scenarios. Perceived benefits, concerns, and information needs were also assessed. In this experimental survey, individuals from 11 US healthcare systems in the Electronic Medical Records and Genomics (eMERGE) Network were randomly allocated to one of three hypothetical scenarios: tiered consent and controlled data sharing; broad consent and controlled data sharing; or broad consent and open data sharing. Of 82,328 eligible individuals, exactly 13,000 (15.8%) completed the survey. Overall, 66% (95% CI: 63%-69%) of population-weighted respondents stated they would be willing to participate in a biobank; willingness and attitudes did not differ between respondents in the three scenarios. Willingness to participate was associated with self-identified white race, higher educational attainment, lower religiosity, perceiving more research benefits, fewer concerns, and fewer information needs. Most (86%, CI: 84%-87%) participants would want to know what would happen if a researcher misused their health information; fewer (51%, CI: 47%-55%) would worry about their privacy. The concern that the use of broad consent and open data sharing could adversely affect participant recruitment is not supported by these findings. Addressing potential participants' concerns and information needs and building trust and relationships with communities may increase acceptance of broad consent and wide data sharing in biobank research.

引用

页码：414 / 427

页数：14

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