McDonald Receives NIH Grant to Study Intellectual Disability
Research Ethics
Katherine McDonald, Ph.D., associate professor of
public health in the Falk College and faculty fellow in the Burton Blatt Institute, received a grant from the National Institutes of Health's (NIH) Eunice Kennedy Shriver National Institute of Child Health & 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, J.D., Ph.D., 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 Syracuse University in 2011. Her
dual appointment reflects a unique and unprecedented
partnership between SU's colleges and BBI towards
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.