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.
authors.affiliation: 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.
authors.forename: Saskia C
authors.initials: SC
authors.lastname: Sanderson
authors.affiliation: Department of Pediatrics, University of Louisville, Louisville, KY 40202, USA. Electronic address: kyle.brothers@louisville.edu.
authors.forename: Kyle B
authors.initials: KB
authors.lastname: Brothers
authors.affiliation: Department of Biostatistics, Vanderbilt University, Nashville, TN 37203, USA.
authors.forename: Nathaniel D
authors.initials: ND
authors.lastname: Mercaldo
authors.affiliation: Center for Biomedical Ethics and Society, Vanderbilt University, Nashville, TN 37203, USA.
authors.forename: Ellen Wright
authors.initials: EW
authors.lastname: Clayton
authors.affiliation: Ethics Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH 45229, USA.
authors.forename: Armand H Matheny
authors.initials: AHM
authors.lastname: Antommaria
authors.affiliation: Center for Genetic Medicine, Northwestern University, Chicago, IL 60611, USA.
authors.forename: Sharon A
authors.initials: SA
authors.lastname: Aufox
authors.affiliation: Center for Human Genetics, Marshfield Clinic Research Foundation, Marshfield, WI 54449, USA.
authors.forename: Murray H
authors.initials: MH
authors.lastname: Brilliant
authors.affiliation: Department of Biomedical and Health Informatics, Children's Hospital of Philadelphia, Philadelphia, PA 19104, USA.
authors.forename: Diego
authors.initials: D
authors.lastname: Campos
authors.affiliation: Group Health Research Institute, Seattle, WA 98101, USA.
authors.forename: David S
authors.initials: DS
authors.lastname: Carrell
authors.affiliation: Center for Applied Genomics, Children's Hospital of Philadelphia, Philadelphia, PA 19104, USA.
authors.forename: John
authors.initials: J
authors.lastname: Connolly
authors.affiliation: Essentia Institute of Rural Health, Duluth, MN 55805, USA.
authors.forename: Pat
authors.initials: P
authors.lastname: Conway
authors.affiliation: Department of Bioethics and Humanities, University of Washington, Seattle, WA 98195, USA.
authors.forename: Stephanie M
authors.initials: SM
authors.lastname: Fullerton
authors.affiliation: 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.
authors.forename: Nanibaa' A
authors.initials: NA
authors.lastname: Garrison
authors.affiliation: Department of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai, New York, NY 10029, USA.
authors.forename: Carol R
authors.initials: CR
authors.lastname: Horowitz
authors.affiliation: Department of Genome Sciences, University of Washington, Seattle, WA 98195, USA.
authors.forename: Gail P
authors.initials: GP
authors.lastname: Jarvik
authors.affiliation: Division of Genomics and Society, National Human Genome Research Institute, Bethesda, MD 20892, USA.
authors.forename: David
authors.initials: D
authors.lastname: Kaufman
authors.affiliation: Center for Human Genetics, Marshfield Clinic Research Foundation, Marshfield, WI 54449, USA.
authors.forename: Terrie E
authors.initials: TE
authors.lastname: Kitchner
authors.affiliation: Division of Genomic Medicine, National Human Genome Research Institute, Bethesda, MD 20892, USA.
authors.forename: Rongling
authors.initials: R
authors.lastname: Li
authors.affiliation: Group Health Research Institute, Seattle, WA 98101, USA.
authors.forename: Evette J
authors.initials: EJ
authors.lastname: Ludman
authors.affiliation: Essentia Institute of Rural Health, Duluth, MN 55805, USA.
authors.forename: Catherine A
authors.initials: CA
authors.lastname: McCarty
authors.affiliation: Biomedical Ethics Program, Mayo Clinic, Rochester, MN 55905, USA.
authors.forename: Jennifer B
authors.initials: JB
authors.lastname: McCormick
authors.affiliation: Biomedical Informatics Research Center, Marshfield Clinic Research Foundation, Marshfield, WI 54449, USA.
authors.forename: Valerie D
authors.initials: VD
authors.lastname: McManus
authors.affiliation: Genetic Counseling Graduate Program, Cincinnati Children's Hospital Medical Center and University of Cincinnati, Cincinnati, OH 45229, USA.
authors.forename: Melanie F
authors.initials: MF
authors.lastname: Myers
authors.affiliation: Group Health Research Institute, Seattle, WA 98101, USA.
authors.forename: Aaron
authors.initials: A
authors.lastname: Scrol
authors.affiliation: Genomic Medicine Institute, Geisinger Health System, Danville, PA 17822, USA.
authors.forename: Janet L
authors.initials: JL
authors.lastname: Williams
authors.affiliation: Vanderbilt Epidemiology Center, Vanderbilt University Medical Center, Nashville, TN 37203, USA.
authors.forename: Martha J
authors.initials: MJ
authors.lastname: Shrubsole
authors.affiliation: Department of Biostatistics, Vanderbilt University, Nashville, TN 37203, USA.
authors.forename: Jonathan S
authors.initials: JS
authors.lastname: Schildcrout
authors.affiliation: Center for Genetic Medicine, Northwestern University, Chicago, IL 60611, USA.
authors.forename: Maureen E
authors.initials: ME
authors.lastname: Smith
authors.affiliation: Division of Genetics and Genomics and the Manton Center for Orphan Diseases Research, Boston Children's Hospital, Boston, MA 02115, USA.
authors.forename: Ingrid A
authors.initials: IA
authors.lastname: Holm
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D018070:Biological Specimen Banks / Q000941:ethics*; D035843:Biomedical Research / Q000941:ethics; D057286:Electronic Health Records / Q000941:ethics; D005260:Female; D015894:Genome, Human; D023281:Genomics; D006801:Humans; D033181:Information Dissemination / Q000941:ethics*; D007258:Informed Consent / Q000941:ethics*; D008297:Male; D008875:Middle Aged; D018907:Privacy; D011639:Public Opinion; D012959:Socioeconomic Factors; D014481:United States; D055815:Young Adult
keywords: biobank research; biorepository research; broad consent; data sharing; informed consent; tiered consent