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

Saskia C. Sanderson, Kyle B. Brothers, Nathaniel D. Mercaldo, Ellen Wright Clayton, Armand H.Matheny Antommaria, Sharon A. Aufox, Murray H. Brilliant, Diego Campos, David S. Carrell, John Connolly, Pat Conway, Stephanie M. Fullerton, Nanibaa’ A. Garrison, Carol R. Horowitz, Gail P. Jarvik, David Kaufman, Terrie E. Kitchner, Rongling Li, Evette J. Ludman, Catherine A. McCartyJennifer B. McCormick, Valerie D. McManus, Melanie F. Myers, Aaron Scrol, Janet L. Williams, Martha J. Shrubsole, Jonathan S. Schildcrout, Maureen E. Smith, Ingrid A. Holm

Research output: Contribution to journalArticle

43 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)414-427
Number of pages14
JournalAmerican Journal of Human Genetics
Volume100
Issue number3
DOIs
StatePublished - Mar 2 2017

Fingerprint

Information Dissemination
Research
Electronic Health Records
Privacy
Genomics
Surveys and Questionnaires
Research Personnel
Delivery of Health Care
Health
Population

All Science Journal Classification (ASJC) codes

  • Genetics
  • Genetics(clinical)

Cite this

Sanderson, S. C., Brothers, K. B., Mercaldo, N. D., Clayton, E. W., Antommaria, A. H. M., Aufox, S. A., ... Holm, I. A. (2017). Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US. American Journal of Human Genetics, 100(3), 414-427. https://doi.org/10.1016/j.ajhg.2017.01.021
Sanderson, Saskia C. ; Brothers, Kyle B. ; Mercaldo, Nathaniel D. ; Clayton, Ellen Wright ; Antommaria, Armand H.Matheny ; Aufox, Sharon A. ; Brilliant, Murray H. ; Campos, Diego ; Carrell, David S. ; Connolly, John ; Conway, Pat ; Fullerton, Stephanie M. ; Garrison, Nanibaa’ A. ; Horowitz, Carol R. ; Jarvik, Gail P. ; Kaufman, David ; Kitchner, Terrie E. ; Li, Rongling ; Ludman, Evette J. ; McCarty, Catherine A. ; McCormick, Jennifer B. ; McManus, Valerie D. ; Myers, Melanie F. ; Scrol, Aaron ; Williams, Janet L. ; Shrubsole, Martha J. ; Schildcrout, Jonathan S. ; Smith, Maureen E. ; Holm, Ingrid A. / Public Attitudes toward Consent and Data Sharing in Biobank Research : A Large Multi-site Experimental Survey in the US. In: American Journal of Human Genetics. 2017 ; Vol. 100, No. 3. pp. 414-427.
@article{3d887b4f8abe47d4b6e9940354bbd2b7,
title = "Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US",
abstract = "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.",
author = "Sanderson, {Saskia C.} and Brothers, {Kyle B.} and Mercaldo, {Nathaniel D.} and Clayton, {Ellen Wright} and Antommaria, {Armand H.Matheny} and Aufox, {Sharon A.} and Brilliant, {Murray H.} and Diego Campos and Carrell, {David S.} and John Connolly and Pat Conway and Fullerton, {Stephanie M.} and Garrison, {Nanibaa’ A.} and Horowitz, {Carol R.} and Jarvik, {Gail P.} and David Kaufman and Kitchner, {Terrie E.} and Rongling Li and Ludman, {Evette J.} and McCarty, {Catherine A.} and McCormick, {Jennifer B.} and McManus, {Valerie D.} and Myers, {Melanie F.} and Aaron Scrol and Williams, {Janet L.} and Shrubsole, {Martha J.} and Schildcrout, {Jonathan S.} and Smith, {Maureen E.} and Holm, {Ingrid A.}",
year = "2017",
month = "3",
day = "2",
doi = "10.1016/j.ajhg.2017.01.021",
language = "English (US)",
volume = "100",
pages = "414--427",
journal = "American Journal of Human Genetics",
issn = "0002-9297",
publisher = "Cell Press",
number = "3",

}

Sanderson, SC, Brothers, KB, Mercaldo, ND, Clayton, EW, Antommaria, AHM, Aufox, SA, Brilliant, MH, Campos, D, Carrell, DS, Connolly, J, Conway, P, Fullerton, SM, Garrison, NA, Horowitz, CR, Jarvik, GP, Kaufman, D, Kitchner, TE, Li, R, Ludman, EJ, McCarty, CA, McCormick, JB, McManus, VD, Myers, MF, Scrol, A, Williams, JL, Shrubsole, MJ, Schildcrout, JS, Smith, ME & Holm, IA 2017, 'Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US', American Journal of Human Genetics, vol. 100, no. 3, pp. 414-427. https://doi.org/10.1016/j.ajhg.2017.01.021

Public Attitudes toward Consent and Data Sharing in Biobank Research : A Large Multi-site Experimental Survey in the US. / Sanderson, Saskia C.; Brothers, Kyle B.; Mercaldo, Nathaniel D.; Clayton, Ellen Wright; Antommaria, Armand H.Matheny; Aufox, Sharon A.; Brilliant, Murray H.; Campos, Diego; Carrell, David S.; Connolly, John; Conway, Pat; Fullerton, Stephanie M.; Garrison, Nanibaa’ A.; Horowitz, Carol R.; Jarvik, Gail P.; Kaufman, David; Kitchner, Terrie E.; Li, Rongling; Ludman, Evette J.; McCarty, Catherine A.; McCormick, Jennifer B.; McManus, Valerie D.; Myers, Melanie F.; Scrol, Aaron; Williams, Janet L.; Shrubsole, Martha J.; Schildcrout, Jonathan S.; Smith, Maureen E.; Holm, Ingrid A.

In: American Journal of Human Genetics, Vol. 100, No. 3, 02.03.2017, p. 414-427.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Public Attitudes toward Consent and Data Sharing in Biobank Research

T2 - A Large Multi-site Experimental Survey in the US

AU - Sanderson, Saskia C.

AU - Brothers, Kyle B.

AU - Mercaldo, Nathaniel D.

AU - Clayton, Ellen Wright

AU - Antommaria, Armand H.Matheny

AU - Aufox, Sharon A.

AU - Brilliant, Murray H.

AU - Campos, Diego

AU - Carrell, David S.

AU - Connolly, John

AU - Conway, Pat

AU - Fullerton, Stephanie M.

AU - Garrison, Nanibaa’ A.

AU - Horowitz, Carol R.

AU - Jarvik, Gail P.

AU - Kaufman, David

AU - Kitchner, Terrie E.

AU - Li, Rongling

AU - Ludman, Evette J.

AU - McCarty, Catherine A.

AU - McCormick, Jennifer B.

AU - McManus, Valerie D.

AU - Myers, Melanie F.

AU - Scrol, Aaron

AU - Williams, Janet L.

AU - Shrubsole, Martha J.

AU - Schildcrout, Jonathan S.

AU - Smith, Maureen E.

AU - Holm, Ingrid A.

PY - 2017/3/2

Y1 - 2017/3/2

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=85012918005&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85012918005&partnerID=8YFLogxK

U2 - 10.1016/j.ajhg.2017.01.021

DO - 10.1016/j.ajhg.2017.01.021

M3 - Article

C2 - 28190457

AN - SCOPUS:85012918005

VL - 100

SP - 414

EP - 427

JO - American Journal of Human Genetics

JF - American Journal of Human Genetics

SN - 0002-9297

IS - 3

ER -