Welcome to the Mental Capacity & Research Participation (MCAR) Web Resource
Participation in research has been a key focus of disability politics, and academic disability activism in recent years, with the use of research as a tool for challenging oppression, and the right of disabled people to have a ‘voice’ through research being significant elements of this focus. Such issues exist, however, alongside the ethical concerns associated with protecting vulnerable members of society from exploitation, with the socio-historical background around these concerns in relation particularly to clinical research being particularly pertinent to the field of disability-related research and politics.
The legal, ethical, and methodological issues involved in attempting to balance these priorities of ‘voice’ and of ‘protection’ are encapsulated in the framework of the Mental Capacity Act 2005, which includes provisions relating to the involvement of adults in research who lack the capacity to provide ‘consent’ (see particularly Sections 30-34 Mental Capacity Act 2005, and the related sections of the Mental Capacity Act 2005 Code of Practice.) These issues are important for a wide range of stakeholders – including people with disabilities and their families and other supporters, academic researchers, and clinical and social care professionals; and yet guidance on the involvement in research of adults lacking capacity to consent is not routinely included in training and professional development, or made available to disabled people or their families and supporters.
On 26th May 2017, a symposium was held at the York Law School, University of York, organized by Gillian Loomes (PhD researcher in the Department of Sociology, University of York), and Jed Meers (Lecturer, University of York Law School), and funded by a Postgraduate Interdisciplinary Award from the Research Centre for Social Sciences (RCSS), University of York. The symposium had the aim of bringing together interested stakeholders from academic, practitioner, and (self) advocacy backgrounds, to share their experiences in this area of research, and to discuss collaboratively what would help in the development of skills training and support for academic and practitioner researchers keen to involve people lacking capacity to consent in their research, and for disabled people who are, or who wish to be active as research participants.
The event was called “Nothing About Us Without Us: Exploring the ethical and methodological issues in researching with, and working co-productively with people whose disability/illness means they lack the capacity to ‘consent’.” and was covered on Twitter, using the hashtag #NAUWUYork.
You can see a Storify of a range of tweets from the event here.
This website builds on the momentum of the symposium by bringing together resources from the event and encouraging future collaborative discussion and engagement on emerging themes and issues.
It includes films of the 4 talks presented by academic and practitioner researchers at the symposium:
“Involving People in Research who Lack the Capacity to ‘Consent’: A Starting Point” (Gillian Loomes, University of York)
“Disability Studies, Consent and Capacity” (Prof. Dan Goodley, University of Sheffield)
“Promote the Vote: General Election 2015” (Elaine James and Rob Mitchell, Bradford Council)
“Negotiating the MCA: A Hybrid Ethnographer’s Experience” (Julie Latchem, Cardiff University)
Also, three participants at the symposium also took part in interviews sharing their views on the topics discussed, and these interviews are available to watch on the website. Topics covered in the talks and interviews included the intersections between mental capacity legislation and disability politics in the context of research participation (Gillian Loomes, Prof. Dan Goodley), the role of mental capacity in conducting practitioner-research, (Elaine James and Rob Mitchell) and the practicalities of negotiating ethical approval, and actually conducting research with adults who lack the capacity to consent (Julie Latchem).
In addition to the videos, you will also find on this website a blog section, which begins by presenting a summary of the roundtable discussion that took place at the symposium on 26th May at the University of York, and which will grow over time to present perspectives, debates, and to summarize other published material relating to the broad topic of research participation involving adults who lack the capacity to consent.
If you are interested in writing a contribution for the blog, or if you have questions or issues you’re keen to explore on the topic of mental capacity and research participation, please contact Gillian Loomes at firstname.lastname@example.org to discuss your ideas.
To receive updates and join the MCAR community, please enter your information below: