England and Wales: the role of the Mental Capacity Act

In England and Wales, the involvement in research of people lacking the capacity to consent to participation is governed by the MCA.8 Specifically, the MCA 2005 sets out in Sections 30–34 of the Act the conditions under which such people may be involved in research, including specifying the requirements for gaining ethical approval for such research (Section 30 MCA 2005) and setting out a role for family members, and others concerned with the welfare of the individual lacking capacity, to be consulted regarding the participation of the individual in research (Section 32 MCA 2005). These provisions are contextualised in the related Code of Practice, which indicates a commitment to the involvement in research of people lacking the capacity to consent:

It is important that research involving people who lack capacity can be carried out, and that it is carried out properly. Without it, we would not improve our knowledge of what causes a person to lack or lose capacity, and the diagnosis, treatment, care and needs of people who lack capacity.9

Notably, the commitment in the MCA 2005 Code of Practice to research involvement is quite different from that evident in disability research more widely. Particularly, its reference to the advancement of ‘our knowledge’ concerning ‘diagnosis, treatment, care and needs’ seems far removed from the concerns with ‘voice’ and ‘resistance’ that are central to the role of research as articulated by disability rights advocates. Further, in contrast to the commitment expressed by disability researchers to ensuring as much control as possible for disabled people,10 the emphasis of the MCA 2005 is on the ‘protection’ of the person lacking capacity. The aim of protection is therefore pursued ahead of the goals of aiding and maximising participation—as has been noted in relation to ethical guidance concerning other ‘vulnerable’ groups, such as children.11

There is evidence of emerging sensitive reflection regarding the methodological implications for researchers working within the framework of the MCA 2005, for example in ethnographic research in the context of inpatient neurological rehabilitation.12 However, the issues I explore here concern the potential impact of such ‘protective’ legislative provisions on disabled people themselves, and on disability community and politics.

I argue that these issues are significant, given the importance of research participation to disability politics, and explore here the implications of the MCA 2005 in this context. I do this from a personal perspective, as a person with a disabled identity and commitment to disability-related research, and consider with reference to my two impairments, autism and Leri Weill dyschondrosteosis (a musculoskeletal condition), the implications for my identity and politics of a loss of capacity to provide informed consent (for example, if I were to be in a vegetative or minimally conscious state and therefore lose the capacity I currently possess to consent to research participation). I conclude by considering partial solutions presented by the MCA 2005 itself and suggesting a direction of travel for future discourse on these issues, both within the disabled community and beyond.

Mental capacity and research participation: some concerns

The first issue of possible concern for individuals who value involvement in disability-related research as a key part of their social identity and politics is found in Section 31 of the MCA 2005. This governs the types of research in which people lacking capacity to consent may legitimately participate and states specifically that:

The research must be connected with (a) An impairing condition affecting P, or (b) Its treatment. (Section 31(2) MCA 2005)

It then clarifies that an

‘Impairing condition’ means a condition which is (or may be) attributable to, or which causes or contributes to (or may cause or contribute to) the impairment of, or disturbance in the functioning of the mind or brain. (Section 31(3) MCA 2005)

This provision sets out the requirement for an established link between the focus and aims of the research in question, and the ‘impairing condition’ experienced by the individual concerned that has led to, or is related to their lack of capacity to consent to participation. In the ethnography, Latchem12 demonstrates what such a link may involve in practice, as she reflects on her ethnographical research on the rehabilitation of people with severe brain injuries. For her, the focus of the research is clearly on the brain injury that ‘causes or contributes to the impairment of, or disturbance in the functioning of the mind or brain’ leading to the individual’s lack of capacity to consent.

The aim of this requirement can be said to be the protection of individuals lacking the capacity to consent from being used as ‘guinea pigs’ in research, and there are clear sociohistorical reasons for such concern. However, a situation that does not appear to be envisaged by either the MCA 2005 or the related Code of Practice is one where an individual with an existing (physical) disability who loses capacity (eg, if they are in a vegetative or minimally conscious state) may still wish to participate in research concerning the experiences of people with their physical disability, but where there is no connection with a condition causing or contributing to an impairment of the mind or brain.

This is potentially troubling in the context of disability rights, and I will use two aspects of my own circumstances to illustrate why. First, I have a diagnosis of Asperger syndrome (an autism spectrum condition). Studies of autistic and other related stakeholder communities have indicated that there is a difference between the topics of autism research attracting funding and the research priorities of autistic people and their supporters.13 It is therefore an issue of political concern for many autistic adults, myself included, to have a ‘voice’ regarding the types of autism-related research that we support through participation. The loss of such ‘voice’ arising from a loss of capacity to consent to research participation would be an issue of concern for me and, when considered across the autistic population, would have the potential to impact on the types and focuses of autism-related research more widely.

Second, I have a rare musculoskeletal condition called Leri Weill dyschondrosteosis. The rarity of this condition, and consequent lack of relevant clinical or social research, has shaped my experience of it—notably in relation to engagement with clinicians, for all of whom I represent the first case of the condition they have come across. Such lack of research on the condition is experienced as problematic in a wide range of medicosocial contexts, including in navigating the clinical interactions and relevant bureaucratic pathways leading to diagnosis and, subsequently, in attempting to ascertain prognosis—an issue of particular significance in the context of a condition relating to physical growth and physical and social development, and to secure necessary adjustments in education or employment contexts.

It would therefore form part of my political commitment to disability rights and to social change for disabled people to participate in and engage with research focusing on this condition. As I currently have the capacity to give informed consent to such participation, my right to exercise this aspect of my disability politics and to experience any direct or indirect benefits arising from my participation in this research remains available to me. Seemingly, however, in the event of my losing the capacity to consent to participation, I am, on the face of it, also likely to lose the right to participate in and to be represented in such research, as it could in no way be linked to an ‘impairing condition’ that causes or contributes to my lack of capacity to consent. I argue that this is deeply personally problematic in the sense that it threatens a key aspect of my social and political identity, and also potentially denies me the indirect benefits of research participation recognised by the MCA 2005 itself in the Code of Practice, as

For example, if the research involves interviews and the person has the opportunity to express their views, this could be considered of real benefit to a particular individual.14

I value the right for my disabilities, which are key aspects of my life experience and my social and political identities, to be represented in clinical and social research. The idea that this right may be challenged in the event of my losing the capacity to consent to research participation troubles me. It troubles me, and it makes me question what I can do about it.

What can/could I do about this?

It is clear, then, that a loss of mental capacity (eg, if I were to be in a vegetative or minimally conscious state) would negatively impact on my ability to participate in disability-related research. One aspect of this negative impact, that of the requirement for a connection between the focus of the research in question and the impairment causing or contributing to the disturbance in functioning of my mind or brain, is seemingly insurmountable within the current legislative and policy framework, and could perhaps form the basis of future discussion and activism within the political disabled community. However, with regard to the right to participate in research more generally, following a loss of capacity to consent, it seems that the MCA 2005 itself could provide me with at least partial solutions. Such solutions are, I argue, found in the provisions of the MCA 2005 (and related policy) concerned with advance decision-making and advance care-planning. These are aspects of law and policy conferring precedent autonomy on capacitous adults—enabling them to make decisions, appoint another person (or other persons) to make specific decisions in their best interests and/or set out their wishes and preferences regarding medical treatment, health and welfare, in advance of a time when they lack the capacity to make such decisions for themselves. There are three relevant aspects of this legislative and policy framework—(1) Advance Decisions to Refuse Treatment (ADRT), (2) Lasting Power of Attorney (LPA) for Health and Welfare and (3) Advance Statements—and I will now set out what each of these provisions entails, along with their potential impact on the situations regarding research participation I have explored above.

Considering first the ADRT, this is a provision set out in Sections 24–26 of the MCA 2005, where an adult (aged 18 or over) can specify in advance of their losing capacity and medical treatments that they wish to refuse in the event that they lose the capacity to give or refuse consent. It is legally binding, but only as long as it complies with the requirements of validity and applicability set out in Section 25 of the MCA 2005. However, the ADRT deals only with treatment refusal, and in any case, participation in clinical or social research is very likely to fall outside of the scope of ‘treatment’ envisaged by the MCA 2005 or the related Code of Practice. It is therefore unlikely that the provisions of the MCA 2005 concerning ADRT in their current form are likely to be of use in the context of research participation.

The second provision of the MCA 2005 that confers a form of precedent autonomy on capacitous individuals is the LPA—here concerned with decisions relating to health and welfare, and this is perhaps of more use in the types of situation with which I am concerned here, particularly as it may intersect with the role of ‘consultee’ provided for in relation to research participation by Section 32 of the MCA 2005. According to Section 9 of the MCA 2005, the LPA enables an adult with capacity (‘the donor’ or ‘P’) to confer on a donee, or donees, authority to make decisions about any or all decisions relating to their personal welfare, or specified aspects of their personal welfare. This would mean that an adult with capacity who had the kinds of political view or preference I have discussed above in relation to disability research would be able to name a person, or persons, to make decisions on their behalf regarding what clinical or social research they should participate in. It would therefore seem to provide the possibility to name the person or persons who should be consulted by researchers according to their duty to consult, set out in Section 32 of the MCA 2005.

The use of LPA in such circumstances comes with two notable caveats. First, there are cost implications in making and registering an LPA, which could act as a deterrent or barrier to (disabled) people wishing to exercise an aspect of precedent autonomy in this way. Second, unlike with an ADRT, an attorney is bound, according to Section 9 (4)(a) of the MCA 2005, to make a decision based on P’s best interests, rather than necessarily on what P themselves would have decided. However, recent case law has interpreted best interests, including where no LPA has been created, in such a way as to be closely aligned with P’s previously expressed wishes, feelings, views and beliefs (see especially Briggs v Briggs ⁱ). This means that it is quite possible that the creation of an LPA for health and welfare could offer one potential avenue for capacitous adults to exert control over decision-making regarding their participation in clinical or social disability-related research in circumstances where they lose capacity to consent.

The third means of exercising precedent autonomy is not set out in the MCA 2005 and is not legally binding. It nevertheless gives a capacitous adult scope to set out their preferences and views in advance of a time when they lose capacity. The ‘advance statement’ is described in National Health Service (NHS) guidance (NHS, 2014) as a written statement that sets down preferences, wishes, beliefs and values regarding future care. It aims to provide a guide to anyone involved in making decisions on an individual’s behalf if they have lost the capacity to make or communicate such decisions. While such statements are not legally binding, these have legal standing in the sense that they provide scope for a capacitous adult to provide evidence of their wishes, feelings, values and beliefs, which must be taken into account as part of a best-interest decision-making process carried out as set out in Section 4 of the MCA 2005. They seem clearly to provide scope for people with views regarding the types of research in which they seek to participate to provide guidance for those making such decisions on their behalf. This could therefore represent a mechanism to provide ‘voice’ for individuals wishing to ensure that their own preferences with regard to research participation are respected and for those of us wishing to influence disability politics to collectively express views and preferences. I therefore argue that advance statements should become a key focus both for disabled individuals and for collective disability politics.

What does this mean for disabled people, for the politics of disability research and for disability rights?

I have explored with reference to my own experience of disability, and of politics and activism through disability-related research, the possible implications of the MCA 2005 for disabled people and for disability communities in the context of research participation. I have focused particularly on the fact that there is the potential for disabled people who lose the capacity to consent to be denied the right to participate in disability research that does not relate directly to their loss of capacity and, therefore, to lose a previously valued element of their ‘voice’ in terms of influencing disability politics through research. I have suggested that this should form a focus of attention and discussion for the disabled community and for researchers.

I have also considered the potential for people such as myself, who care about our right to be represented in research, to use existing tools for advance decision-making and advance care-planning in order to exert some control over our future research participation, with LPA in respect of health and welfare decisions, and a (non-binding) advance statement representing perhaps the most useful of such tools. I conclude by asserting that whatever form it takes, these issues should become a focus of concern for disabled people and for disability politics.

Research is important to the disability rights movement. It is a powerful mechanism for expanding the range of treatments and interventions available to us and for going beyond our own individual experiences of impairment and related social oppression, and establishing our common ground and diversity. Disability research has long been committed to ‘nothing about us without us’—and this commitment must extend to consideration of the circumstances, rights and needs of all of us—including those of us who lack the capacity to consent to research participation.