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)
JournalJournal of Empirical Research on Human Research Ethics
DOIs
StateAccepted/In press - Jan 1 2018

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autonomy
Parents
Research
research results
parents
Pediatrics
participation

Keywords

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

ASJC Scopus subject areas

  • Social Psychology
  • Education
  • Communication
  • Law

Cite this

Mitchell, P. B., Ziniel, S. I., Savage, S. K., Christensen, K. D., Weitzman, E. R., Green, R. C., ... Holm, I. A. (Accepted/In press). Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing? Journal of Empirical Research on Human Research Ethics. https://doi.org/10.1177/1556264617753483

Enhancing Autonomy in Biobank Decisions : Too Much of a Good Thing? / Mitchell, Phoebe B.; Ziniel, Sonja I.; Savage, Sarah K.; Christensen, Kurt D.; Weitzman, Elissa R.; Green, Robert C.; Huntington, Noelle L.; Mathews, Debra J; Holm, Ingrid A.

In: Journal of Empirical Research on Human Research Ethics, 01.01.2018.

Research output: Contribution to journalArticle

Mitchell, PB, Ziniel, SI, Savage, SK, Christensen, KD, Weitzman, ER, Green, RC, Huntington, NL, Mathews, DJ & Holm, IA 2018, 'Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing?', Journal of Empirical Research on Human Research Ethics. https://doi.org/10.1177/1556264617753483
Mitchell, Phoebe B. ; Ziniel, Sonja I. ; Savage, Sarah K. ; Christensen, Kurt D. ; Weitzman, Elissa R. ; Green, Robert C. ; Huntington, Noelle L. ; Mathews, Debra J ; Holm, Ingrid A. / Enhancing Autonomy in Biobank Decisions : Too Much of a Good Thing?. In: Journal of Empirical Research on Human Research Ethics. 2018.
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