Katherine McDonald (PHP) PI, Maya Sabatello (Columbia University) co-PI, and Alan Foley (SOE) co-I, Including Adults with Intellectual Disability in Precision Medicine Research – Project ENGAGE, NIH. 7/15/22-6/30/27
Adults with intellectual disability experience significant health disparities and may benefit from precision medicine research advances. However, they are underrepresented in research and understanding of solutions to the ethical, legal, and social consent-related challenges that present barriers to their inclusion in this research is limited.
Gaps in knowledge about the views of adults with intellectual disability on key issues in precision medicine research–such as genomic privacy and empowerment as well as absence of practical tools for precision medicine researchers–perpetuate their exclusion and create barriers to generating new knowledge to address the health needs of this underserved population. Our multidisciplinary team and academic-community partnership will explore these challenges and address them by developing a disability accessible and protocol-adaptable precision medicine research consent toolkit.
This research marks the first time multiple stakeholders, including adults with intellectual disability, will collaborate to use empirical ethics inquiry to address consent and other challenges to inclusion in precision medicine research. The Project ENGAGE toolkit will help precision medicine researchers avoid the pitfalls of bias and upholds principles of human agency valued by community members and yield critical theoretical and practical insights to precision medicine research inclusive of adults with intellectual disability.