Parents’ attitudes toward consent and data sharing in biobanks: A multisite experimental survey

Armand H.Matheny Antommaria, Kyle B. Brothers, John A. Myers, Yana B. Feygin, Sharon A. Aufox, Murray H. Brilliant, Pat Conway, Stephanie M. Fullerton, Nanibaa’ A. Garrison, Carol R. Horowitz, Gail P. Jarvik, Rongling Li, Evette J. Ludman, Catherine A. McCarty, Jennifer B. McCormick, Nathaniel D. Mercaldo, Melanie F. Myers, Saskia C. Sanderson, Martha J. Shrubsole, Jonathan S. SchildcroutJanet L. Williams, Maureen E. Smith, Ellen Wright Clayton, Ingrid A. Holm

Research output: Contribution to journalArticlepeer-review

17 Scopus citations


Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks.

Original languageEnglish (US)
Pages (from-to)128-142
Number of pages15
JournalAJOB Empirical Bioethics
Issue number3
StatePublished - Jul 3 2018

Bibliographical note

Funding Information:
The Consent, Education, Regulation and Consultation (CERC) Survey project within the eMERGE Network was initiated and funded by the National Human Genome Research Institute (NHGRI) with additional funding by the National Institutes of Health (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), U01HG008657 (Kaiser Permanente/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).

Publisher Copyright:
© 2018, © 2018 Taylor & Francis Group, LLC.


  • biobank
  • biorepository
  • broad consent
  • data sharing
  • informed consent
  • pediatrics


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