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Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples
Kurt D Christensen1,2, Sarah K Savage3, Noelle L Huntington2,3
11 Brigham and Women's Hospital, Boston, MA, USA.
Insights
Most parents want to know their children's genetic research results, even when given options to exclude sensitive conditions. Providing examples of disclosure preferences increases participant satisfaction.
Area of Science:
- Genetics
- Bioethics
- Participant-centered research
Background:
- Participant preferences are crucial in genetic research result disclosure.
- Previous models may not fully capture participant desires for information.
Purpose of the Study:
- To assess parental preferences for disclosing individual genetic research results.
- To evaluate the impact of providing specific disclosure examples on participant satisfaction.
Main Methods:
- Parents of pediatric patients set disclosure preferences based on disease characteristics.
- Participants reviewed hypothetical genetic reports and adjusted preferences.
- Satisfaction was measured using a 0-10 scale.
Main Results:
- A majority of participants (64%) initially wanted all results disclosed.
- Among those who initially excluded categories, 38% later expanded their disclosure preferences after reviewing examples.
- Participant satisfaction significantly increased after reviewing examples (4.7 to 7.2, p < .001).
Conclusions:
- Providing concrete examples of genetic result disclosure options enhances participant engagement and satisfaction.
- Preference-setting models should include specific examples to accurately reflect participant desires.
- Most participants tend to desire broader disclosure of genetic research findings.
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.
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