Institutionalized children injected with hepatitis, adult men with syphilis studied but not treated, youngsters fed doses of radiation with their breakfast cereal – three examples of infamous biomedical experiments that lead to today’s research regulations. Distrust remains.
Katherine McDonald PhD was a guest lecturer at Upstate recently, speaking on the subject of research involving people with developmental disabilities. She is an associate professor in Syracuse University’s Department of Public Health, Food Studies and Nutrition.
Previous exploitation is part of the reason people with developmental disabilities are not part of many scientific studies. Then there are the logistics. How do researchers recruit them? Who has the authority to give consent to participate – the person or, when there is one, their guardian? Should the person undergo assessment before joining the study, or is it unfair to treat him or her differently than other study participants?
Research is important because it can pique the public conscience and influence decision-making, and “people with disabilities need direct involvement in things that impact their lives,” McDonald argues. But too often people with developmental disabilities don’t have a seat at the table. They generally do not occupy public office or positions in academia or jobs reviewing grant proposals — which raises the question of whether today’s research addresses their needs.