Wanted: a social contract for the practice of medicine

The scandal about stored organs¹ is only one recent manifestation of fundamental disagreements about what people expect from medicine. Irreconcilable differences remain between those who think it's kinder not to go into detail when asking permission to remove organs after death and those who think that respect for individuals' autonomy requires that they should be given all information, no matter how distressing. Moreover, in society the balance of such beliefs changes over time. We propose that an independent high level standing commission should be created to determine socially acceptable norms in the NHS and medicine generally—in effect to draw up and maintain a “social contract” between healthcare workers and the community they serve.

There are many areas in which expectations differ over the practice of medicine. Among these are the degree of confidentiality to which doctors should be bound. For example, if an inheritable genetic abnormality in one patient is discovered should the doctor pass this information on to other potentially affected members of the family, even if the index patient refuses to give permission?² More generally, what degree of criminal behaviour justifies a doctor in breaking medical confidentiality? Most, though not all, would agree that discovering that one's patient had committed murder or child abuse would justify informing the police. But what about rape? Bank robbery? Tax fraud?

Medical research provokes similar disagreements. What should be the norms for consent for research into emergency treatments such as resuscitation or the treatment of respiratory distress in newborn babies? What about medical research that involves consulting patients' notes: should it require patients' informed consent or could consent reasonably be presumed, given safeguards over anonymity? Can left over blood samples or out of date donated blood be used for medical research without consent? And so on. . . .

An independent, multiperspective commission into socially acceptable norms in health care could identify areas of agreement and disagreement, approaches that minimised disagreement, and potentially acceptable compromises. Its “deliverable” would be a charter—or social contract—that explained the norms of the NHS and of medical practice more broadly. Some of these norms could be definitive (staff and patients are expected to be polite, patients to respect the rights of other patients, and doctors to obtain consent for their interventions). Others might be presumptive. For example, a norm might be agreed to explain to patients that medical notes are generally available to bona fide researchers, given approval by a research ethics committee, while allowing—though not encouraging—patients to exclude their records from such use. Similarly, there might be agreement that in medical emergencies treatments could be given in the context of an approved research study without informed consent. In such a case the information would be given subsequently, and patients could explicitly reject in advance participation in any research without consent. Where proposals were particularly contentious the commission might propose alternative ways of dealing with the problem, asking parliament to make the final decision. Accepted recommendations would be added to the government's guide to the NHS.³

Such a commission might be set up by parliament, or it could be established by the healthcare professions and patients' associations. However established, it should be independent, reflect diverse perspectives, have members who command respect, and consult widely. It should set out to propose, when possible, agreed and practical solutions likely to command wide support. When it can find no consensus it should set out options for debate.

In specifically seeking social consensus such a commission would act as a counterweight to media more concerned to promote sensationalism and conflict and to politicians courting short term popularity. It might also help medicine to find a way forward that is both creative and sensitive to society's changing needs and help restore the trust between doctors and the people they serve. Without it, policy making will continue to be haphazard and sometimes tinged with panic.