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

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, developmen...

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Bibliographic Details
Published in:Journal of empirical research on human research ethics 2017-04, Vol.12 (2), p.97-106
Main Authors: Christensen, Kurt D., Savage, Sarah K., Huntington, Noelle L., Weitzman, Elissa R., Ziniel, Sonja I., Bacon, Phoebe L., Cacioppo, Cara N., Green, Robert C., Holm, Ingrid A.
Format: Article
Language:English
Subjects:
Adult
Biological Specimen Banks
Comprehension
Disclosure
Ethical Issues in Research with Children
Female
Genetic Predisposition to Disease
Genetic Research
Genetic Testing
Genomics
Hospitals
Humans
Informed consent
Male
Massachusetts
Medical ethics
Medical records
Middle Aged
Parents - psychology
Patient Preference - psychology
Patient Satisfaction
Patients rights
Pediatrics
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Summary: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.
ISSN:1556-2646
1556-2654
DOI:10.1177/1556264617697839