Summary
This national survey documents research participants' preferences for receiving research results and ancillary information beyond clinically actionable findings. The authors propose a framework called 'return of value' to encompass the diverse ways participants value different types of research information. Findings indicate substantial public demand for comprehensive result return, with clear demographic variation in informational needs that should inform future research governance policies.
UK applicability
The findings are relevant to UK research ethics and governance frameworks, particularly regarding participant consent and data return practices in biomedical research. However, as a United States study, direct policy applicability would require confirmation that UK participant preferences and values align with the observed American patterns.
Key measures
Proportion of participants valuing research results (78.5%); proportion indicating results would increase researcher trust (70.3%); variation in valued information types by education, race/ethnicity, and age
Outcomes reported
The study surveyed a nationally diverse sample to determine what types of research results and information research participants valued, including genetic findings, disease risk predictions, clinical trial information, and data usage transparency. It measured the proportion of participants who found results valuable (78.5%), the likelihood that receiving results would increase trust in researchers (70.3%), and variation in information preferences across demographic subgroups.
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