Format

Send to

Choose Destination
Am J Hum Genet. 2017 Mar 2;100(3):414-427. doi: 10.1016/j.ajhg.2017.01.021. Epub 2017 Feb 9.

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

Author information

1
Department of Behavioural Science and Health, University College London, London WC1E 6BT, UK; Great Ormond Street Hospital, London WC1N 3JH, UK; Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, New York, NY 10029, USA. Electronic address: saskia.sanderson@ucl.ac.uk.
2
Department of Pediatrics, University of Louisville, Louisville, KY 40202, USA. Electronic address: kyle.brothers@louisville.edu.
3
Department of Biostatistics, Vanderbilt University, Nashville, TN 37203, USA.
4
Center for Biomedical Ethics and Society, Vanderbilt University, Nashville, TN 37203, USA.
5
Ethics Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH 45229, USA.
6
Center for Genetic Medicine, Northwestern University, Chicago, IL 60611, USA.
7
Center for Human Genetics, Marshfield Clinic Research Foundation, Marshfield, WI 54449, USA.
8
Department of Biomedical and Health Informatics, Children's Hospital of Philadelphia, Philadelphia, PA 19104, USA.
9
Group Health Research Institute, Seattle, WA 98101, USA.
10
Center for Applied Genomics, Children's Hospital of Philadelphia, Philadelphia, PA 19104, USA.
11
Essentia Institute of Rural Health, Duluth, MN 55805, USA.
12
Department of Bioethics and Humanities, University of Washington, Seattle, WA 98195, USA.
13
Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, WA 98101, USA; Department of Pediatrics, Division of Bioethics, University of Washington, Seattle, WA 98101, USA.
14
Department of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai, New York, NY 10029, USA.
15
Department of Genome Sciences, University of Washington, Seattle, WA 98195, USA.
16
Division of Genomics and Society, National Human Genome Research Institute, Bethesda, MD 20892, USA.
17
Division of Genomic Medicine, National Human Genome Research Institute, Bethesda, MD 20892, USA.
18
Biomedical Ethics Program, Mayo Clinic, Rochester, MN 55905, USA.
19
Biomedical Informatics Research Center, Marshfield Clinic Research Foundation, Marshfield, WI 54449, USA.
20
Genetic Counseling Graduate Program, Cincinnati Children's Hospital Medical Center and University of Cincinnati, Cincinnati, OH 45229, USA.
21
Genomic Medicine Institute, Geisinger Health System, Danville, PA 17822, USA.
22
Vanderbilt Epidemiology Center, Vanderbilt University Medical Center, Nashville, TN 37203, USA.
23
Division of Genetics and Genomics and the Manton Center for Orphan Diseases Research, Boston Children's Hospital, Boston, MA 02115, USA.

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.

KEYWORDS:

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

PMID:
28190457
PMCID:
PMC5339111
DOI:
10.1016/j.ajhg.2017.01.021
[Indexed for MEDLINE]
Free PMC Article

Supplemental Content

Full text links

Icon for Elsevier Science Icon for PubMed Central
Loading ...
Support Center