March is national disability awareness month and clinical research is often done without much disability representation. Today, we’ll unpack some aspects of ableism in clinical trials and how you can actively work to decrease harm and make your research as inclusive as possible.
What is Ableism?
Any practice which treats disabled people as invisible, disposable, or otherwise assumes able-bodiedness as every person’s default state is considered ableism. Ableism is incredibly harmful, yet is unfortunately incorporated as a societal norm in many (sometimes subtle) facets of life.
In medical research, this often means the exclusion of disabled people or any disability demographics in clinical trials and medical journals. When treatments are developed without the inclusion of disabled people, the treatments themselves may not be effective with certain comorbidities, or worse, may pose serious health risks.
How can I avoid Ableism in my Research?
One of the biggest problems facing people with disabilities is a lack of representation in ongoing research. This is a dangerous precedent, as it makes it very difficult to generalize any new discoveries to a disabled population. Medicines, treatments, and therapies must be trialed on as diverse a sample as possible to reveal any adverse effects or inefficaciousness that might occur when a treatment is given to someone with a pre-existing condition.
To oversimplify, the best thing you can do to avoid ableism is to include disabled people in your research wherever it is safe and possible to do so. Health and safety are paramount to all research, and including people with disabilities or pre-existing conditions is not possible for every clinical trial. However, where you are able to adapt your exclusion criteria methods of communication, or consent process to accommodate disabled people, you can choose to make a vital contribution to medical research.
Beyond this, advertise exactly what degree of support and accommodation you’re able to provide during your trial. Are alternative communication forms available for people who need them? Can you offer to sit and talk through consent and protocol forms with people for clarity? Are you a decentralized trial that allows people to participate from home without any travel?
Becca Wilson, a disability activist at the University of Liverpool shared her thoughts on clinical trial exclusion:
“What’s really useful is when organisations are proactive about what support they can give to disabled participants, if they need it.”
Where can I go to learn more?
The best sources to learn more about ableism and the very real danger it poses are disability rights activists and direct representatives of the community. Hear their concerns and work actively to incorporate them into your clinical trials. Learn more from Becca Wilson. Or, read this study on ableism in medicine by Shane Neilson.
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