Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing?

Phoebe B. Mitchell, Sonja I. Ziniel, Sarah K. Savage, Kurt D. Christensen, Elissa R. Weitzman, Robert C. Green, Noelle L. Huntington, Debra J. Mathews, Ingrid A. Holm

Research output: Contribution to journalArticle

Abstract

The opportunity to receive individual research results (IRRs) in accordance with personal preferences may incentivize biobank participation and maximize perceived benefit. This trial investigated the relationship between parents’ preferences and intent to participate (ITP) in biobank research utilizing their child’s genetic information. We randomized parents of pediatric patients to four hypothetical biobanks, one of which employed a preference-setting model for return of results regarding their child. ITP was highest among those desiring all types of IRRs (93.3%) and decreased as participants became increasingly selective with their preferences (p <.0001). We demonstrated that most parents would participate in a biobank that allows for preference setting; however, those who set preferences to receive a narrower set of IRRs are less likely to participate.

Original languageEnglish (US)
Pages (from-to)125-138
Number of pages14
JournalJournal of Empirical Research on Human Research Ethics
Volume13
Issue number2
DOIs
StatePublished - Apr 1 2018

Keywords

  • bioethics
  • biorepositories/biobanks
  • children and adolescent/pediatrics
  • genetic research
  • return of results

ASJC Scopus subject areas

  • Social Psychology
  • Education
  • Communication

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  • Cite this

    Mitchell, P. B., Ziniel, S. I., Savage, S. K., Christensen, K. D., Weitzman, E. R., Green, R. C., Huntington, N. L., Mathews, D. J., & Holm, I. A. (2018). Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing? Journal of Empirical Research on Human Research Ethics, 13(2), 125-138. https://doi.org/10.1177/1556264617753483