Journal
JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS
Volume 10, Issue 4, Pages 414-426Publisher
SAGE PUBLICATIONS INC
DOI: 10.1177/1556264615599620
Keywords
participant preferences; pediatrics; return of individual genomic research results; biobank research; preference-setting tool
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Funding
- National Human Genome Research Institute/National Institutes of Health (NIH) [NHGRI R01HG006615, NHGRI U01HG006828, NHGRI U19 HD077671]
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The perceived benefit of return of individual research results (IRRs) in accordance to participants' preferences in genomic biobank research is unclear. We developed an online preference-setting tool for return of IRRs based on the preventability and severity of a condition, which included an opt-out option for IRRs for mental illness, developmental disorders, childhood-onset degenerative conditions, and adult-onset conditions. Parents of patients <18 years of age at Boston Children's Hospital were randomized to the hypothetical scenario that their child was enrolled in one of four biobanks with different policies for IRRs to receive (a) None, (b) All, (c) Binarychoice to receive all or none, and (d) Granularuse the preference-setting tool to choose categories of IRRs. Parents were given a hypothetical IRRs report for their child. The survey was sent to 11,391 parents and completed by 2,718. The Granular group was the most satisfied with the process, biobank, and hypothetical IRRs received. The None group was least satisfied and least likely to agree that the biobank was beneficial (p < .001). The response to the statement that the biobank was harmful was not different between groups. Our data suggest that the ability to designate preferences leads to greater satisfaction and may increase biobank participation.
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