Abstract

Inclusion in precision medicine research: Views of adults with intellectual disability

Katherine McDonald, PhD1 and Maya Sabatello, LLB, PhD2
(1)Syracuse University, Syracuse, NY, (2)Columbia University, New York, NY

APHA 2023 Annual Meeting and Expo

Precision medicine research (PMR) holds potential to transform health by unearthing genetic and non-genetic mechanisms of disease and developing tailored prevention and treatment. PMR has stirred hopes for a new, scientifically-based, and empowering healthcare model that reaches, and can benefit, those who are most vulnerable and experience substantial health disparities. Participation of adults with intellectual disability in PMR offers new opportunities to address their substantial health disparities. Yet efforts to identify their unique needs for inclusion and engagement in PMR have been lacking. Despite evidence that most adults with intellectual disability demonstrate consent capacity, precision medicine researchers may exclude them, fail to accommodate their unique needs in decision-making, or use proxy consent with little meaningful assent. Consent of adults with intellectual disability to PMR further raises novel concerns, including best models for consent and how to manage the return of genetic results while also assuring genomic privacy and promoting inclusion and empowerment—believed to be critical for successful PMR. These gaps contribute to adults with intellectual disability being understudied and create barriers to generating knowledge to address their health needs. They also impede empowerment and are increasingly ethically questionable: adults with intellectual disability want to be included in PMR. We will present findings from our NIH-funded national survey with adults with intellectual disability on their preferences regarding decision-making role, communication of results, genomic privacy, and needs for engagement. We will also discuss translating these findings to build new resources for the responsible engagement of adults with intellectual disability in PMR.

Diversity and culture Ethics, professional and legal requirements Public health or related research Social and behavioral sciences