When Patients Should be Obliged to Participate in Medical Research

In a recent article on the BBC News website Professor Anthony Mathur, Head of Advanced Cardiac Imaging at Barts and the NHS Trust, argues that cardiac patients should be obliged to take part in medical research (See http://news.bbc.co.uk/1/hi/health/8399763.stm). It seems that it is difficult to get patients to agree to participate in clinical trials, however research subjects are required if new heart stem cell therapies are to be developed. Professor Mathur’s proposal has been given short shrift by David Hunter, writing on the BMJ Group Journal of Medical Ethics blog (See http://blogs.bmj.com/medical-ethics/2009/12/09/should-patients-be-obliged-to-participate-in-research/). Hunter suggests that Mathur’s proposal amounts to a failure to respect autonomy and he further suggests that the way to solve this problem is to devote more time and resources to recruitment, rather than relying on cardiac patients agreeing to participate. Michael Cook writing on BioEdge describes a possible defense of Mathur’s proposal in radical utilitarian terms. (See http://www.bioedge.org/index.php/bioethics/bioethics_article/8777/). On such views, if the benefits of research outweigh the costs then, all things being equal, the proposal is morally justified, regardless of concerns about respect for individual autonomy.


Now requiring patients to participate in clinical trials would be a controversial step and I agree with Hunter that if we can avoid it by devoting a few more resources to clinical trials then we should; but what if we cannot? My view is that both Hunter and Cook are misconstruing the proposal and that it does not involve any violation of autonomy, so it is a proposal that non-utilitarians can agree with. Patient autonomy is currently protected through the informed consent process. The details of particular operations, including the risks involved and any possible side effects, are explained to patients and they are asked to consent to those operations on the basis of the relevant information provided before any operation can take place. Suppose though that patients in public hospitals were asked to consent to both an operation and participation in a clinical trial after relevant information about both was provided to them. They could have the option of participation in both, or neither, and if they chose to participate in both then they would be doing so knowingly, so their autonomy would be protected.

It may be objected that the proposal as I have construed it involves removing an option, the option of having the operation and not participating in the clinical trial, which is the option that most patients seem to prefer. I agree, but this is not a restriction on autonomy. Instead it is a restriction on liberty. In my view it is a restriction on liberty that is justified. Patients will be free to have operations without participating in clinical trials, provided that they pay for these themselves. If they expect society to pay for (or heavily subsidise) their operations then it is only reasonable that society receives something in return. Participation in a clinical trial is a way in which patients in a public hospital system can compensate society as a whole for covering the costs of their medical care. Patients can be asked to do this in a way that is fully consistent with respect for the value of patient autonomy and fully consistent with standard interpretations of the doctrine of informed consent. Mathur’s proposal may not be necessary, but if it is needed to recruit participants for clinical trials then it should not be dismissed. At any rate, there are not good ethical grounds to dismiss it.



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One Response to When Patients Should be Obliged to Participate in Medical Research

  • Anthony Lawton says:

    QUOTE: If they expect society to pay for (or heavily subsidise) their operations then it is only reasonable that society receives something in return.

    BUT should you not take account of the circumstance that the patient may already have paid taxes. You could argue that it is ‘only reasonable’ that, if a citizen has paid taxes, they might expect treatment without strings in return.

    AND practically speaking might one not consider ‘paying’ volunteers for participation in trials; after all, everyone else involved is usually being paid.


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