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J Empir Res Hum Res Ethics. 2017 Apr;12(2):97-106. doi: 10.1177/1556264617697839.

Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples.

Author information

1
1 Brigham and Women's Hospital, Boston, MA, USA.
2
2 Harvard Medical School, Boston, MA, USA.
3
3 Boston Children's Hospital, MA, USA.
4
4 Johns Hopkins University School of Medicine, MD, USA.
5
5 Brigham and Women's Hospital, MA, USA.
6
6 Broad Institute, MA, USA.

Abstract

Discussions about disclosing individual genetic research results include calls to consider participants' preferences. In this study, parents of Boston Children's Hospital patients set preferences for disclosure based on disease preventability and severity, and could exclude mental health, developmental, childhood degenerative, and adult-onset disorders. Participants reviewed hypothetical reports and reset preferences, if desired. Among 661 participants who initially wanted all results (64%), 1% reset preferences. Among 336 participants who initially excluded at least one category (36%), 38% reset preferences. Participants who reset preferences added 0.9 categories, on average; and their mean satisfaction on 0 to 10 scales increased from 4.7 to 7.2 ( p < .001). Only 2% reduced the number of categories they wanted disclosed. Findings demonstrate the benefits of providing examples of preference options and the tendency of participants to want results disclosed. Findings also suggest that preference-setting models that do not provide specific examples of results could underestimate participants' desires for information.

KEYWORDS:

biorepositories/biobanks; children and adolescent/pediatrics; genetic research; incidental findings/return of results; preferences

PMID:
28421887
PMCID:
PMC5407299
DOI:
10.1177/1556264617697839
[Indexed for MEDLINE]
Free PMC Article

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