By Gill Loomes – PhD researcher (Department of Sociology, University of York/Leeds University Law School
It’s great to be launching this web resource and space for debate and discussion on the subject of mental capacity and research participation.
The resource is inspired and informed by my PhD research on the Mental Capacity Act 2005 in practice, and builds on work that began with my guest-editing of a Special Issue of the York Policy Review on the topic of Mental Capacity (which you can read – open access – here). Especially relevant is the article contributed by Dr Julie Latchem reflecting on here ethnographic research in the field of neurological rehabilitation – here.
This website is space for a growing collection of resources. In particular, the blog will provide space for sharing research articles on the subject of research participation and mental capacity, for thinking through and engaging with the issues, and for inviting guest-contributions from others with thoughts and experience in this important area of research.
In particular, I’m keen to encourage and engage in networking and collaboration with practitioners, (self) advocates and other interested ‘stakeholders’. My own background is as a disabled person, a specialist-autism advocate, and a tutor of professional post-graduate researchers. I strongly believe that research and practice should work hand in hand to inform and support each other, and hope that this website provides a platform to encourage such support.
The issues around mental capacity and research participation are multiple and complex. Some of the things I’m particularly interested in exploring are the following:
- The issues and tensions between ‘representation’ in research, and ‘protection’ from exploitation, risk or potential harm for those who lack the capacity to ‘consent’.
- The role of family members and others in acting as ‘consultees’ on behalf of adults who may be involved in research, but who lack the capacity to ‘consent’.
- The potential ways in which adults with capacity can/could provide or refuse consent to participate in (specific types of) research.
- The kinds of training and support that may be provided for researchers who want to include adults in their research who lack the capacity to ‘consent’.
- How to build and maintain ‘bridges’ between academic- and practitioner-researchers, other practitioners, disabled people, their family members, supporters and other ‘stakeholders’ engaged in research.
I would be really interested in hearing about the experience and/or thoughts of others in these areas – and also in hearing about other priorities that people might have in this aspect of mental capacity law and practice.
Get in touch!