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J Empir Res Hum Res Ethics. 2018 Apr;13(2):125-138. doi: 10.1177/1556264617753483. Epub 2018 Feb 23.

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

Author information

1
1 Johns Hopkins University, Baltimore, MD, USA.
2
2 Center for Patient Safety and Quality Research, Boston, MA, USA.
3
3 University of Colorado, Aurora, USA.
4
4 Children's Hospital Colorado, Aurora, USA.
5
5 Facial Dysmorphology Analysis, Inc., Boston, MA, USA.
6
6 Harvard University, Boston, MA, USA.
7
7 Boston Children's Hospital, MA, USA.
8
8 Brigham and Women's Hospital, Boston, MA, USA.

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.

KEYWORDS:

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

PMID:
29471711
DOI:
10.1177/1556264617753483

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