“It is important to me to know where the information is going”: Views of adults with intellectual disability on data sharing in precision medicine research

Le résumé fourni par la source

Purpose: Adults with intellectual disability can benefit from precision medicine research (PMR) but their participation in general studies is limited. Although data sharing may be critical for scientific findings to emerge, the views of adults with intellectual disability on data sharing are unknown. Methods: We developed and implemented a survey in collaboration with a multipartner Steering Committee. Questions included general views toward PMR and comfort level with, concerns about, and possible facilitators for data sharing and future uses. Analyses included descriptive statistics and comparison for key demographic characteristics. Results: A total of 150 adults with intellectual disability across racial, ethnic, gender, and guardianship status groups completed the survey. Views on PMR were highly positive, but only 59% were comfortable with data sharing. Participants expressed strong support for data reuses to improve health, quality of life, and understanding of causes of intellectual disability (all 79%) but less for data reuse to prevent intellectual disability (64%). Most reported concerns about data sharing, especially reuses that may harm people with intellectual disability (45%). We found, and discussed, differences in views and concerns by key demographic characteristics and intersectionality. Conclusion: Response to the concerns requires a multilevel approach. Partnership with disability communities can promote enrollment in PMR.

Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.