Capacity, consent and autonomy: health research participation for people with a learning disability
Dr Amy Russell
University of Leeds, United Kingdom
Health research findings translate into the guidance given to doctors and nurses about what medicine to prescribe or what care to give. People with a learning disability are often excluded from health research, based on assumptions about how well they can understand or take part in research. Yet they will receive medicine and treatments through mainstream services like everyone else.
I will look at how research ethics committees think and talk about people with a learning disability as participants in research. I’ll find out how researchers who recruit people into research understand situations where the person has a learning disability and I will speak to people with a learning disability to get their opinion on taking part in health research and the process of giving consent.
This research will be used to improve guidance for ethics panels, researchers and information about research for people with a learning disability.