2nd March 2018
In this post, I’m going to summarize and discuss my latest publication relating to the subject of mental capacity and research participation. It was published at the end of 2017, in the Annual of Autism and Intellectual Disability in Adults (Vol. 2), published by Pavilion (which also has a wide range of other very interesting contributions relating to autism and research, and is well worth a look.)
The article reference is:
Loomes, G. (2017) “A socio-legal analysis of the Mental Capacity Act (2005) and its implications for participation in autism-related research.” Autism and Intellectual Disability in Adults 2 25-28
The abstract reads as follows:
The field of autism research is expanding rapidly, but surrounding this growth is a complex debate around the desired priorities of such research. This debate reflects the wider political tensions within autistic and autism communities characterized as the ‘autism war’. In this chapter, it is argued that a key consideration for those concerned with autism-related research in England and Wales is the Mental Capacity Act 2005, which provides a legal framework for research production and participation involving adults who lack the capacity to provide informed consent. An overview of this legal framework is presented and the challenges and opportunities it represents for those planning and producing research on the contested ‘battleground’ of the ‘autism war’ are considered.
These are the key points I make in the article:
- The field of autism research is growing exponentially, for example, in the U.S. alone, in 2010 federal and private funding for autism research exceeded $400 million (Office of Autism Research Coordination, National Institute of Mental Health, on behalf of International Autism Coordinating Committee (IACC), 2012).
- Across this background of increased funding, there are complex debates and an emerging disparity between the types of research to which funding is allocated, and the views and priorities of autistic and autism communities (Pellicano et al., 2014).
- These debates take place within a social context of an autistic/autism community that appears divided into two ‘camps’ – one of which sees autism as a tragedy, and pursues a cure; with the other arguing that autism is a culture that needs to be enabled. This situation has been described as an ‘autism war’ (Hodge, 2017).
- The Mental Capacity Act 2005, and related Code of Practice (summarized elsewhere on this website) lay out a specific framework for the participation in research of adults whose illness or disability means that they lack the capacity to provide informed consent to their participation. These provisions are likely to apply to a proportion of autistic people.
- The issue of heterogeneity within the autistic community – particularly concerning cognitive and verbal ability, is at the heart of much discussion and debate about the nature of autism and the priorities of related research. I suggest that the Mental Capacity Act 2005 is of significance in this landscape, and needs to be considered in relation to autism research. I identify two key reasons for this:
- (1) The Mental Capacity Act 2005 sets out a role for ‘consultees’ – parents/carers or other concerned individuals who are called to give called to give opinions regarding whether a person lacking capacity to consent would wish to participate in research. Given the politically contested landscape surrounding autism research, and particularly the difference in views between different ‘stakeholder’ communities, this consultee role should be explored and examined to consider the extent to which it has the potential to influence the politics and direction(s) of travel of autism research.
- (2) The legislation and policy in the Mental Capacity Act 2005 and the Code of Practice, is framed in terms that reference ‘cause’, ‘diagnosis’, ‘treatment’ and ‘cure’. These may be argued to construct and reproduce the medicalized approach to autism that is perceived as hostile by many autistic people. In this sense, the legislation seems to speak strongly to one side in the ‘autism war’ at the expense of the other. This political impact must be analyzed and explicated.
There is a clear move towards increasing the level of participation in autism related research of autistic people themselves, not only as research ‘subjects’ but as fully engaged stakeholders who influence not only the substantive research undertaken, but also the topics to be studied and the methodologies employed. Events focusing on participatory autism research are increasingly well attended, with lively and stimulating discussion leading to collaborative action, and the work of organizations such as the Participatory Autism Research Collective (PARC) is gaining increasing amounts of attention from across the academic and non-academic autism communities. I argue that the impact of the Mental Capacity Act 2005, and its influence on the participation of autistic people in research who lack the capacity to provide consent, needs to be part of this move.