Conditions for informed broad consent

This blog was contributed by Kaesha Marantz, a University of Oxford (St Peter's College) Pre-Clinical Medical student, based on an essay submitted to the Andrew Markus Essay Prize in Medical Ethics 2024. The essay was awarded runner up in the competition. The Ethox Centre provides medical ethics and law teaching for medical students in Oxford. 

The four ethical pillars all medical students are taught are beneficence, non-maleficence, justice, and autonomy. These are not all treated equally – for hundreds of years, the dominant model of the physician-patient relationship was that of paternalism, where the physician is afforded authority over the patient’s health decisions and is charged with a duty to act in the patient’s best interests. Thus physicians largely acted in accordance with the principle of beneficence, honouring the other three pillars where possible but not conflicting with this first principle.

© Outrage regarding the use of cowpox – derived from a lower (and here monstrous) creature – to vaccinate babies against smallpox led to public outcry. Unfortunately, misinformation has only grown more sophisticated since the Victorian times. Credit: A monster being fed baskets of infants and excreting them with horns; symbolising vaccination and its effects. Etching by C. Williams, 1802(?). Source: Wellcome Collection. Attribution-NonCommercial 4.0 International (CC BY-NC 4.0).Over the last hundred years, there has been a shift towards an autonomy-centric model, where patient choices – even those conflicting with their health – are respected. Increasingly, it has become an ethical duty for physicians to disclose to patients’ information which would permit them to make their own decisions. This patient-led model has allowed patients to refuse treatment, or to make decisions that result in their own death. These changing attitudes are reflected in the UK’s recent decision to legalise the assisted dying bill.

I feel strongly that these changes are good. And yet, I believe this marks the death of something important. Increasingly – supported by the polarising and isolating effect of social media –misinformation has run rampant, rearing its ugly head in the coalescence of groups like anti-vaccine activists, Covid-19 denialists, and alternative medicine practitioners. Autonomy enables patients to take charge of their own health; this is unquestionably good. But simultaneously – and perhaps because of this – we have lost faith in the expert opinion.

It is impossible to justify a return to paternalism. The shift towards the patient-led model and our increasing emphasis on autonomy as a crucial pillar of medical ethics reflects the true belief that a patient knows best what treatment decision is in-line with his or her true sense of well-being, even when these decisions may lead to the patient’s death.

In the following essay, however, I explore an example of where the physician’s expertise can marry with an individual’s expression of autonomy in medicine to create a kind of shared decision-making. The battleground for this idea is broad consent. People have traditionally consented to participate in studies by being informed of its details like methods, aims, benefits, and risks – much as the patient-led model of medicine is carried out. Yet on the rise is a new form of broad consent, where the participant – in a controversial exercise of autonomy – consents to future studies, for which it is impossible to convey such details, as they are yet to be determined.

For example, the UK Biobank has collected samples from over 500,000 individuals. The Biobank stores information like bone density and detailed brain scans, and maintains physical samples of blood, urine, and saliva from these study participants for scientists from over 100 countries to access. The incredible potential and widespread access of the UK Biobank would put onerous requirements on these study participants to repeatedly consent to the over 9000 studies that have thus far been performed on these data – unless we use a model of broad consent.

I argue in defense of this, and in a manner that preserves both autonomy and yet exercises the professional’s medical expertise.

The full essay 'Conditions for informed broad consent' can be downloaded as a pdf. If you need the essay in an alternative format for accessibility, please contact us.