Research Ethics for All: Research Ethics Training for Patient Stakeholders with IDD

Katherine McDonald (PH) PI and Ariel Schwartz (MGH Institute of Health Professions) Co-PI, Patient-Centered Outcomes Research Institute (PCORI), 11/1/21-8/31/23.

As part of a broader movement to advance disability rights, adults with developmental disabilities are increasingly influencing scientific research and taking on new roles as community research partners. In these roles, adults with developmental disabilities help decide what to study, how to study it, what it all means, and what to do with the new information—with the goal of conducting research that is in-line with community needs and values. However, institutional requirements for training of individuals who are involved in research with people and do things such as conduct interviews and surveys pose a barrier to their full engagement: existing trainings are inaccessible. Using stakeholder-engagement, we will develop an open-access research ethics training that is relevant, accessible, and acceptable to community research partners with developmental disabilities, researchers, and ethics review boards.

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