Medical Experts Call for Inclusion of People with Disabilities

posted on Sep 13 by Brian in the Advocacy, Disability Discrimination, Disability Law, Disability News, Health, Healthcare, Opinion and Discussion category

Mainstream biomedical research – clinical trials, psychosocial studies and the like – tends to overlook volunteers who have limiting physical issues, despite their results and input being just as valid.  “Without the participation of this population, the science is not all there,” says Associate Professor at Case Western Reserve University’s Frances Payne Bolton School of Nursing, Researcher Associate Ann S.Williams, who wants to change this practice. She is helping do so through the FIND Lab.

Full INclusion of Persons with Disabilities (FIND Lab) is a National Institutes of Nursing Research / National Institute of Health funded center aiming to change the way research is done. “If you’re not sampling from the entire population, you really can’t apply your results to the entire population,” Williams says. According to the U.S. Center for Disease Control and Prevention, 22% of the American population have a disability — more than one-fifth of the country.

“A person in a wheelchair needs to prevent heart disease just as much as a person who can walk,” adds Williams. She and Associate Dean from the Frances Payne Bolton School of Nursing, Shirley M. Moore, have proposed the concept of Universal Design of Research (UDR), which would promote routine inclusion of persons with disabilities in mainstream biomedical and psychosocial studies and thus allow for a better generalization of results. Their efforts are slowly seeing acceptance.

The Americans With Disabilities Act was passed 20 years ago, and the ADA Amendments Act of 2008 went into effect in January 2009. One of the Act’s provisions is that Americans with disabilities be kept involved in scientific and medical research and developments. Williams and Moore argue that people with sight, hearing, or mobility problems should be included in voluntary studies, invited and welcomed, much as advocates from the last century pressed for the inclusion of women and minorities before science had dared consider gender and race may affect different reactions to disease, pharmaceuticals, exercise, metabolism, or psychology.

Have you participated in a clinical trial or study?

Sources:
http://www.sciencedaily.com/releases/2011/05/110511142132.htm
http://fpb.case.edu/FINDLab/