Patient Preferences for the Return of Individual Research Results Derived from Pediatric Biobank Samples. S. Savage1, K. Christensen2, N. Huntington3,4, E. Weitzman4,5,6, S. Ziniel4,5,7, P. Bacon8, C. Cacioppo1, R. Green2,9, I. Holm1,4,10 1) Division of Genetics and Genomics, Children's Hospital Boston, Boston, MA; 2) Division of Genetics, Department of Medicine, Brigham and Womens Hospital and Harvard Medical School; 3) Division of Developmental Medicine, Boston Childrens Hospital; 4) Department of Pediatrics, Harvard Medical School; 5) Division of Adolescent/Young Adult Medicine, Boston Childrens Hospital; 6) Childrens Hospital Informatics Program at the Harvard-MIT Division of Health Sciences and Technology, Boston Childrens Hospital; 7) Center for Patient Safety and Quality Research, Program for Patient Safety and Quality, Boston Children's Hospital; 8) Johns Hopkins University School of Medicine; 9) Partners HealthCare Center for Personalized Genetic Medicine; 10) Manton Center for Orphan Disease Research, Boston Childrens Hospital.
Background: The discussion about handling results identified through research on biobank samples has included calls to incorporate participants' preferences when deciding what individual research results (IRRs) to disclose. However, little is known about participants ability to establish preferences or how preference-setting would affect satisfaction with IRR disclosure. Methods: We invited parents of Boston Childrens Hospital patients to complete a web-based survey exploring the impact of various policies for disclosing IRRs identified in biobanked samples from children. After an educational video, participants were randomized to 1 of 4 hypothetical scenarios for addressing IRRs, including a 'granular arm' where participants set preferences based on the preventability and severity of conditions. Additional choices allowed omission of IRRs about mental health, developmental, childhood degenerative, and adult-onset disorders. Participants viewed potential IRRs and rated their satisfaction of the content and process. Participants were then given the option to reset preferences. Results: Of 11,394 invited parents, 2,718 (23.9%) participated in the survey, including 1,026 randomized into the granular arm (mean age 44, 91% female, 86% white). Initially 62% wanted all 8 categories of IRR, 14% omitted only adult-onset, non-preventable, childhood degenerative, or mental health conditions, and 2% wanted no IRRs (mean # of categories=7.0). After viewing potential IRRs, 14% revised preferences, adding more categories on average (mean # of categories: 5.5 before reset vs. 6.5 after, p<0.001). Mean process and results satisfaction prior to the offer to reset preferences were 7.0 and 6.6, respectively, on 0-10 scales, with scores increasing among those who changed preferences (process: 5.1 before reset vs. 7.2 after, p<0.001; results: 4.7 before reset vs. 7.2 after, p<0.001). Conclusions: While the majority of participants wanted all potential IRRs and few wanted none, about 1/3 expressed more nuanced preferences. Many changed preferences after viewing potential IRRs, with a tendency to want more IRRs. Satisfaction was high for both the process and potential content of IRR return, with large improvements in satisfaction among those who reset preferences. Findings suggest that a high percentage of research participants would take advantage of an ability to set preferences, but that preferences may be difficult to establish without seeing examples of potential IRRs.
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