A Consent Toolkit for Genomics Research Inclusive of Adults with Intellectual Disability: Establishing Feasibility

CUSE Grant – Good to Great, $29,996.

Adults with intellectual disability experience significant health disparities, and can benefit dramatically from genomics research. Yet ethical, legal, and social challenges in the process of informed consent present barriers to the generation of new knowledge to promote health equity. We can identify solutions to these persistent barriers by capitalizing on human rights advances so that adults with intellectual disability can meaningfully control research participation decisions, thereby promoting an increase in genomics research inclusive of adults with intellectual disability and their willingness to be research volunteers. Our long-term goal is to promote the responsible inclusion of adults with intellectual disability in health research that capitalizes on genomic advances, and thereby foster opportunities for advances to promote health. Our goal in this proposal is to lay the groundwork for future work toward this longer-term goal.