Focus Shifts To Transparency In Disability Research
As an increasing number of clinical trials focus on Down syndrome, fragile X and other developmental disabilities, researchers are taking new steps to ensure that those with the conditions know what they’re getting into.
Researchers and drug companies are now using simpler wording, pictures and videos as opposed to lengthy documentation in an effort to help people with intellectual disabilities understand what’s involved when they agree to participate in a trial, reports The Wall Street Journal.
The new materials often detail what will happen during the trial and what side effects a person may see from a drug, for example.
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While parents and other guardians can often provide legal consent, the effort is part of a broader shift toward empowering those with disabilities to self-advocate.
“This is an era of participatory research,” Brian Skotko of the Down Syndrome Program at Massachusetts General Hospital told the newspaper. “We do not want to do research on people with Down syndrome. We want to do research with people with Down syndrome.”