Peter Bates > Citizen Ethicists

Citizen Ethicists

Written by Peter Bates, summer 2023

Patients coproduce healthcare and health research along with other citizens, members of the public, experts by experience, relatives and friends. Well and good. But what, exactly, is our role?

We are Humans who are personally impacted by this thing. When the textbook reports pain, it is our cheeks that get wet.  As the fifteenth century political movement declared, ‘nothing about us, without us’. We are Creatives who ask great questions and suggest brilliant solutions. We are Citizen Ethicists who judge the integrity of what is done to avoid harm, steward resources and improve care and treatment.

The history is simple. Two and a half thousand years ago, Hippocrates urged doctors to follow a moral code and ‘do no harm’. Josef Mengele’s atrocities in the 1940s led to the development of a coherent system to extend this principle into research and from the start it involved the public. Then, somewhere along the road, consciousness of public contribution to ethical thinking was lost.

I coined the term Citizen Ethicist to shine a spotlight on a simple, ever-present reality. Once experts by experience are admitted to discussions about healthcare services so that we can contribute a view on the right way to treat patients, then our role is clear. Once patients and the public are on the team that designs and oversees health research, we can help to ensure that the study is conducted in an ethical fashion and our role is clear. Once lay members sit on the ethics committee to help form an ethical opinion, then our role is clear.

Oddly, lay members of ethics committees are appointed for their deficits rather than their strengths. Guidance documents insist that lay members are appointed yet characterise us by our lack of clinical or academic training rather than by any positive trait or expertise. A similar pattern can be seen across healthcare research and governance – experts by experience, patients and the public are identified and welcomed, but the nature of our role and contribution is not always clear. Our role as Citizen Ethicists is invisible, unrecognised, unacknowledged.

Ethical approval demands a favourable opinion from the ethics committee while ethical practice requires constant vigilance. Ethics is everyone, everywhere, all the time, and this is why research and healthcare delivery needs to be coproduced. Citizen Ethicists help to keep the ship on course by insisting that people are treated right, the planet’s resources are curated and good practices are observed. Making things right, stewarding them well and practicing the good life are all moral judgements, or ethics, if you will.

We don’t need training. Our moral compass functions perfectly well, and we knew straight away that Mengele was wrong, Tuskegee was wrong, Whorlton Hall was wrong. We might need help with complex areas such as research into human embryos, but so do you. Finally, we all need to learn how to disagree well and find the high road that lies beyond our individual preferences.

Postscript: To its credit, the Health Research Authority now encourages research funding applicants to demonstrate how they have “worked with or sought advice from people with relevant experience of the ethical issues which are likely to be important to potential participants.”

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For lots of detail, references and a continually evolving discussion of this, please see: