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 journalArticlepeer-review

64 Scopus citations

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

Bibliographical note

Funding Information:
The CERC Survey project within the eMERGE Network was initiated and funded by NHGRI with additional funding by?the?NIH?Office of the Director through the following grants:?U01HG006828 (Cincinnati Children's Hospital Medical Center/Boston Children's Hospital), U01HG006830 (Children's Hospital of Philadelphia), UOIHG006389 (Essentia Institute of?Rural Health, Marshfield Clinic Research Foundation, and Pennsylvania State University), U01HG006382 (Geisinger Clinic), U01HG006375 (Group Health Cooperative/University of Washington), 3U01HG006379 (Mayo Clinic), U01HG006380 (Icahn School of Medicine at Mount Sinai), 3U01-HG006388 (Northwestern University), U01HG006378 (Vanderbilt University Medical Center), and 3U01HG0006385 (Vanderbilt University Medical Center serving as the Coordinating Center).

Keywords

  • biobank research
  • biorepository research
  • broad consent
  • data sharing
  • informed consent
  • tiered consent

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