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. 2017 Apr;12(2):97-106.
doi: 10.1177/1556264617697839.

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

Kurt D Christensen  1   2 , Sarah K Savage  3 , Noelle L Huntington  2   3 , Elissa R Weitzman  2   3 , Sonja I Ziniel  2   3 , Phoebe L Bacon  4 , Cara N Cacioppo, Robert C Green  2   5   6 , Ingrid A Holm  2   3
Affiliations

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

Kurt D Christensen et al. J Empir Res Hum Res Ethics. 2017 Apr.

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.

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Conflict of interest statement

Disclaimers

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1
Figure 1
Hypothetical Results Report template. Sentences with asterisks are omitted if applicable. Superscripts are not shown, but indicate conditions classified as mental illness (‘M’), developmental disorders (‘D’), childhood onset degenerative conditions (‘C’), and adult-onset conditions (‘A’). Disclosed conditions are bolded, while omitted conditions are shaded and italicized.
Figure 2
Figure 2
Rationales for satisfaction and dissatisfaction about the initial hypothetical results report. P-values represent analyses about whether rationales differed among participants who changed preferences to receive fewer categories of results, participants who did not change preferences, participants who changed preferences but balanced subtractions and additions, and participants who changed preferences to receive more categories of results. formula image Fewer categories after changing preferences formula image Did not change preferences formula image Changed preferences, balancing subtractions and additions formula image More categories after changing preferences
See this image and copyright information in PMC

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