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We need to invest in promoting social consensus
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 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blood samples or out of date donated blood be used for medical research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 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.
Imperial College, London (raanan.gillon{at}ic.ac.uk) Institute of Medical Ethics, Heythrop College, London W8 5HQ
in effect to draw up and maintain a "social contract"
between healthcare workers and the community they serve.
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
Roger Higgs
Kenneth Boyd
Brendan Callaghan
Raymond Hoffenberg
| 1. | Royal Liverpool Children's Inquiry. Report. London: Stationery Office, 2001. www.rlcinquiry.org.uk/ |
| 2. |
Leung WC, Mariman ECM, van der Wouden JC, van Amerongen H, Weijer C.
Ethical debate: Results of genetic testing: when confidentiality conflicts with a duty to warn relatives.
BMJ
2000;
321:
1464-1466 |
| 3. | Department of Health. Your guide to the NHS. London: Department of Health, 2001. |
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