Research Issues Involving People with Intellectual Disability
Intellectual disability is frequently a criterion for exclusion from research studies. This exclusion historically is linked to concerns about protecting individuals who are vulnerable for research procedures that might have physical or psychological risk, but is also related to past misuse of persons with intellectual disability in research protocols and inappropriate experimentation that has occurred in the past. In addition, there has been a question about the ability to cooperate and consent in research studies. However, excluding individuals with intellectual disability from research interferes with the development of new knowledge in relation to intellectual disability. Recent advances in the neurosciences, genetic psychopharmacology, developmental neuropsychiatry, psychology and education show promise for improving the treatment of those with intellectual disability and developmental disabilities.
In recognition of the need for research that will benefit individuals with intellectual disability or provide new knowledge in understanding how intellectual disability syndromes may be applied to others, although not necessarily beneficial to those who participate, the Surgeon General recommended a research agenda for persons with intellectual disability. This report (U.S. Department of Health and Human Services, 2002) recommends the development of a national research agenda to identify gaps in existing scientific knowledge related to health and intellectual disability. This includes methodological challenges, priorities and time tables for achieving priority research. Strategies recommended by the Surgeon General's conference proposed developing specific agendas for basic clinical and translational research. Such studies may facilitate the efficacy of wellness and treatment services and examine service models for persons with intellectual disability. Research agendas must consider legal and ethical issues, health care financing and its relationship to outcomes, and other issues that are identified throughout the community. The Surgeon General recommended the