Research estimates that only one in three Americans has an advance directive, a number that is substantially lower among communities of color, those of lower socio-economic status, and lower levels of education. This semester, College of Law students in Professor…
McDonald Receives NIH Grant to Study Intellectual Disability Research Ethics
Katherine McDonald, associate professor of public health in the David B. Falk College of Sport and Human Dynamics and faculty fellow in the Burton Blatt Institute, has received a grant from the National Institutes of Health’s (NIH) Eunice Kennedy Shriver National Institute of Child Health and Human Development. The research project, “Stakeholder Views on Intellectual Disability Research Ethics,” is expected to have significant ethical and public health implications. Robert S. Olick, associate professor of bioethics and humanities at Upstate Medical University, will serve as co-investigator on the project.
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—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—have noteworthy stakes in the research participation of adults with ID. 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 encourage research to reduce pressing disparities.
“Our long-term goal is to encourage science that is sensitive to the ethical and social dimensions of research with adults with intellectual disabilities and more inclusive of this population,” notes McDonald. “With this funding, our findings have the potential to encourage greater inclusion of people with ID in research that can lead to positive health outcomes. It will also shed light on paths forward in research, intervention development and testing and policy.”
McDonald joined SU in 2011. Her dual appointment reflects a unique and unprecedented partnership between SU’s colleges and BBI toward infusing disability awareness across disciplines. Her current research examines the inclusion of persons with developmental disabilities in research, participation in online communities and its relationship to autistic adults’ social connectedness and well-being, health disparities experienced by autistic adults and community participation among persons with disabilities. Earlier this year, she was named a fellow by the American Association on Intellectual and Developmental Disabilities (AAIDD), an organization that honored her with the 2012 Early Career Award for her achievements and many contributions to the field of developmental disabilities.