Stakeholder Views on Intellectual Disability Research Ethics, New York, 2013

Adults with intellectual disabilities (ID) face significant physical and mental health disparities. Ethical challenges may discourage their inclusion in research and hinder scientific advancements to reduce these health disparities. Five core groups are adults with ID, individuals who provide informal support to adults with ID, individuals who provide services to adults with ID, ID researchers, and Institutional Review Board (IRB) members. Little is known about these stakeholders' opinions on how to ethically include adults with ID in research. Increasing this knowledge base, especially by inviting input from groups whose opinions are rarely examined, is critical to helping the scientific community devise and deploy sensitive and responsive practices and encouraging research to reduce pressing disparities. The research's long-term goal is to encourage science that is sensitive to the ethical and social dimensions of research with adults with ID and more inclusive of this population. The research's aim was to qualitatively study the views of adults with ID, persons who provide informal support to adults with ID, and persons who provide services to adults with ID on the participation of adults with ID in self-report research. The focus on self-report research that aims to study the thoughts and experiences of adults with intellectual disability reflects the field's increased emphasis on direct representation in such research and the less clear risks this research may bear.