Emilie Couchman is an NIHR Clinical Lecturer in general practice with the Division of Primary Care, Palliative Care and Preventive Medicine at the University of Leeds, and a salaried GP in Wiltshire.
The Mental Capacity Act (2005) (MCA) is usually discussed in clinical, legal or safeguarding contexts. While research ethics applications often reference the MCA, this is typically in a narrow, procedural sense; focused on compliance, documentation and the lawful inclusion of people who may lack capacity.1,2 What is far less common is the application of the MCA’s principles as a broader ethical framework for research culture. Yet these principles articulate a philosophy of autonomy, equity and respect that is strikingly aligned with the ambitions of Patient and Public Involvement (PPI) and inclusive research.4–6 Seeing the MCA as an ethical framework rather than a regulatory hurdle would allow us to confront the paternalism that continues to shape research design, ethics processes and institutional culture.
Seeing the MCA as an ethical framework rather than a regulatory hurdle would allow us to confront the paternalism that continues to shape research design, ethics processes and institutional culture.
The MCA begins with a presumption of capacity.1 In research, we claim to begin with a presumption of expertise in lived experience. But in practice, involvement often starts from a deficit model: people are “hard to reach”, “vulnerable” or “lacking understanding” of research. These labels are rarely neutral. They reflect the limitations of our methods, not the limitations of communities. The MCA’s first principle invites us to invert this logic. Instead of assuming that people cannot contribute meaningfully, we should assume they can, and redesign our systems to make that possible.
The second MCA principle – the right to make unwise decisions – resonates strongly with PPI. Lived experience perspectives often question professional assumptions about what matters, what counts as evidence, or what “good” research looks like. At times, these contributions are interpreted as misunderstandings rather than as credible alternative viewpoints. Inclusive research requires us to recognise that differences in perspective don’t weaken rigour; they strengthen relevance.5,6 The MCA reminds us that disagreement is not evidence of incapacity; in research, it should not be treated as evidence of invalidity.
The third principle – providing all practicable support before concluding that someone lacks capacity – maps directly onto the work of enabling meaningful involvement. Accessible materials, flexible formats, culturally grounded approaches and fair remuneration are not optional enhancements; they are the research equivalent of communication aids and reasonable adjustments.4,10 When we fail to provide them, we are not observing a lack of capacity or interest; we are creating it.
The fourth principle – acting in a person’s best interests – is often mistakenly viewed in clinical settings as paternalistic. In the MCA, it is the opposite: a structured process for grounding decisions in the person’s values, preferences, and life context.1,2 In research, this principle exposes how involvement is sometimes used to justify decisions that have already been made. A best interests approach would push us toward co production, fair exchange and clearer communication about how contributions shape decisions.7,11
The MCA reminds us that disagreement is not evidence of incapacity; in research, it should not be treated as evidence of invalidity.
Finally, the “least restrictive option” principle asks us to choose the approach that minimises intrusion on a person’s rights and freedoms (1). In research, this resonates strongly with the movement toward more collaborative decision making, minimising hierarchy and sharing authorship. It aligns with long standing models of participation that distinguish between doing to, doing for and doing with; a spectrum rooted in “Arnstein’s ladder”. This framework conceptualises participation as a hierarchy, ranging from tokenistic forms of involvement to genuine partnership and shared power.8,9
The MCA principles offer a coherent ethical foundation for inclusive research. They show that autonomy is not simply an individual trait but something shaped by relationships, systems and environments that enable, rather than override, people’s agency.12 They also expose a persistent gap between what we say and what we do: autonomy is championed in clinical care, yet research processes often fall back on protectionism, risk aversion and institutional convenience.
If these principles guide clinical practice, they should guide academic research too. They call for more than tokenistic involvement; they ask for genuine partnership. If research aims to generate evidence that improves lives, then those most affected must be able to contribute meaningfully. The MCA provides both a language and a legal precedent for this commitment. Inclusive research is not simply a methodological preference; it is an ethical obligation.
References
1. Department for Constitutional Affairs. Mental Capacity Act 2005 Code of Practice. London: TSO; 2007.
2. House of Lords Select Committee on the Mental Capacity Act 2005. Mental Capacity Act 2005: Post Legislative Scrutiny. London: The Stationery Office; 2014.
3. Care Quality Commission. Monitoring the Mental Capacity Act 2005. London: CQC; 2020.
4. INVOLVE. Briefing notes for researchers: public involvement in NHS, public health and social care research. Eastleigh: NIHR INVOLVE; 2012.
5. Brett J, Staniszewska S, Mockford C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17(5):637–50.
6. Greenhalgh T, Hinton L, Finlay T, et al. Frameworks for supporting patient and public involvement in research: systematic review and co design pilot. Health Expect. 2019;22(4):785–801.
7. NIHR. Guidance on co producing a research project. April 2024. Available from: https://www.learningforinvolvement.org.uk/content/resource/nihr-guidance-on-co-producing-a-research-project/.
8. Arnstein SR. A ladder of citizen participation. J Am Inst Plann. 1969;35(4):216–24.
9. Tritter JQ, McCallum A. The snakes and ladders of user involvement: moving beyond Arnstein. Health Policy. 2006;76(2):156–68.
10. NIHR Centre for Engagement and Dissemination. UK Standards for Public Involvement. London: NIHR; 2019.
11. Slay J, Stephens L. Co production in mental health: A literature review. London: New Economics Foundation; 2013.
12. Mackenzie C, Stoljar N, editors. Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self. Oxford: Oxford University Press; 2000.
Featured photo by Frank Vessia on Unsplash
