November’s Exchange workshop was led by Victoria Shepherd from the School of Medicine at Cardiff University. The session focussed on the processes and challenges involved in working with adult research participants who lack capacity to consent to research. It was informed by Victoria and her colleagues’ research on this topic.
Why involve people who lack capacity to consent in research?
Contrary to popular assumption, people who cannot consent to participate are not always ‘protected’ by being excluded from research. In fact it can be seen as unethical to exclude large groups of people from contributing to research that may help people with their condition or problems in the future. Often, groups routinely excluded from research on the grounds of lack of capacity to consent experience inequalities in care. For example, people with learning disabilities die 15 to 20 years earlier on average than people without, but they are often left out of research which could address this issue. Randomised control trials, considered the strongest form of evidence, often exclude large groups of people such as the very old, on the basis of lack of capacity, meaning that their needs are under-researched and the evidence base for their care is limited. Excluding people from research means silencing their voices and often denying them their wishes and potential benefits of being involved.
Having agreed that involving people without capacity to consent in research can be an ethical course of action we went on to look at how we could go about this.
How to involve people without capacity to consent in research
Victoria started by setting us a question; we were given a short scenario about Abby who was unable to give consent