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

View 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.

Investigators
Abbreviation
J Empir Res Hum Res Ethics
Publication Date
2017-04-19
Volume
12
Issue
2
Page Numbers
97-106
Pubmed ID
28421887
Medium
Print
Full Title
Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples.
Authors
Christensen KD, Savage SK, Huntington NL, Weitzman ER, Ziniel SI, Bacon PL, Cacioppo CN, Green RC, Holm IA