Intellectual and Developmental Disabilities and Inclusion: Ethics and Community Based Participatory Research

Abstract: The first panelist and moderator, a bioethicist, will describe a community-based participatory research (CBPR) project centering the voices of people with IDD. They will describe benefits and challenges to an inclusive CBPR approach to IDD, lessons learned, and future opportunities for ethicists to collaborate with IDD stakeholders and clinical researchers to promote an ethics of inclusion and translation. The second panelist, a graduate student, will describe a citizen-science project that engaged people with IDD, including those with more significant communication challenges. Teams of people with and without IDD used an app to collaboratively identify barriers in health care spaces to receiving care and suggested possible strategies to address them. This is an example of an ethics-based project focusing on tangible policy outcomes. The third panelist, a leader in a national disability advocacy organization, will describe a multi-disciplinary working group on cancer and the IDD community, the ethical implications, including around intersectionality with other underserved identities, and recommendations. This work is a model for ethically grounded engagement around IDD equity and justice across diagnoses and specialties. The fourth panelist, an IDD researcher, will describe implementation of an innovative web-based tool for research ethics training that is accessible to people with IDD. Such an approach will be instrumental to involving people with IDD in IRB reviewed projects as researchers and collaborators. The audience will engage in a discussion about innovative ways to include people with IDD in ethics research and clinical research.