Clinical trials can & should be designed to include people with disabilities

Clinical trials tend to exclude vulnerable populations, such as people with disabilities. Speaking to Joshua Howgego of SciDev.net, Dr. Celia B. Fisher, Director of the Center for Ethics Education, explained that clinical trials can — and should — be designed to include people with disabilities.

People with disabilities tend to be excluded from clinical trials because of a misapplication of the principle of informed consent, as institutional review boards (IRBs) are concerned about participants in trials understanding the potential risks and benefits involved, and want to avoid exploiting people.

“Many times, review boards think people with intellectual disabilities should be excluded so we can protect them from coercion or not really understanding the research they’re in,” Fisher said in the article.

She also points out that excluding people with disabilities violates the ethical principle of justice, as “they don’t have the opportunity to benefit from information that can be derived from that research.”

Fisher’s solution is the “goodness-of-fit” ethic: an approach where researchers adapt the way in which they obtain informed consent to the intellectual strengths and vulnerabilities of the individuals they are recruiting.

For more information, please read Howgego’s article on SciDev.net as well as Fisher’s article entitled “The Goodness-of-Fit Ethic for Informed Consent.”


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