Guide to the moral maze

October 17, 1997

Sheila McLean tells Kate Worsley about her pioneering work on medical ethics and the law

Glasgow is not famed for its warm weather, so when a nice day comes along the city seems to bask in it. Not Sheila McLean, 45, Glasgow born and bred, and director of the university's institute of law and ethics in medicine. Pleasant Sunday afternoon or no, she is spending it indoors, working.

Given her workload it is hardly a surprise. In the wake of the case of Diane Blood, who wanted to be inseminated with her dead husband's sperm, McLean is reviewing the law of medical consent for the government - urgent work which has held up three book projects. (Because Blood's husband Stephen did not give written consent before his death for his sperm to be used, his wife had to fight through the courts to get permission to proceed). McLean is reviewing the legislation which requires proof of written consent before a dead person's tissue or organs can be used.

She gives an average of six papers a month, which she admits is "ludicrous" and is always out and about explaining ethics to medics and schools, and the public too. McLean's distinctive image - rock-chick hair and eyeliner, huge earrings - and straight-talking approach have also made her a media favourite.

Yet it seems the break from work for the interview is a welcome one. Madame Butterfly soars through the air as McLean uncorks the red wine. Her more private side is well known to Ian Kennedy, professor of health law at University College, London. "She's very easy to get along with, no airs and graces."

McLean has been called the progenitor of medical ethics as a legal discipline. In 1976 she ran a course from Glasgow's department of forensic medicine. Six law students came. As far as she knew "there was no one teaching medical ethics in the UK and possibly anywhere". Interest soon exploded, fuelled by the birth of Louise Brown, the first test-tube baby, in 1978 and the exponential growth in reproductive technologies. Now almost every law school in the UK runs such a course. Her institute has a staff of three and in 1990 the International Bar Association awarded her the first chair in the subject.

A consistent advocate of patient rights, McLean's PhD was about the circumstances under which patients consent to medical treatment. Since then she has stuck her neck out to defend "informed consent"- the patient's right to know all relevant medical information about their condition so that they can make an "informed" decision about what kind of treatment they want - despite the prevailing trend to complicate the moral issues involved.

In her view the genetics revolution will turn the work of the past two decades on its head. Already it has put her in the extraordinary position of interviewing a sheep, the genetically engineered Dolly, for television. "I teach students about medical confidentiality and patients' right of access to medical records and medical negligence, with the related genetics issues as a secondary part of the subject. I think in future I'll be teaching negligence or confidentiality as it relates to genetics."

It has been a constant struggle to keep up with rapid advances in technology that have produced ever more unexpected ethical dilemmas. She admits that because so much of what scientists do is happenstance there is little point legislating for brakes on scientific discovery. But debate about the desirability and possible consequences of technological advance is essential, and for this she wants to see the demarcations between the separate sets of ethics and motives of scientists, doctors, lawyers and the public broken down.

She praises Labour's proactive approach. Health minister Tessa Jowell's swift move to set up a committee to look at surrogacy, for instance. "I know a lot of people object, but there are times when you think maybe we should just stop and say, what's it worth to us?" Reproductive technologies, for example, she sees, controversially, as satisfying a desire rather than a need. "It should have been foreseen that the availability of in vitro fertilisation would put pressure on couples who have difficulty conceiving to rush to try it out."

The issue is not how sophisticated technology gets but whether and why a condition should be classed as undesirable. "There's a very grey bit in the middle because so many things, we're going to discover, are caused by our genes." Why, for instance, would someone want to find out if there may be a gene that predisposes people to homosexuality? "I'd want to say what's the problem here and what are we trying to prove?" Old Law, New Medicine, her next book, is "about the extent to which we have medicalised issues which are about human rights and then, because law tends to defer to medicine, we end up in a situation where human rights are doubly jeopardised".

Her approach emphasises people's rights not to have their bodies invaded by medical procedures and not to be discriminated against. She starts with every human being's gut reaction - that these rights should be theirs. "What you then do is to try to find a way of justifying your position, which means often you're knocked off course a bit. In the case of terminating pregnancy on the grounds of foetal handicap it really would make more sense to wait until the baby was born and then, if it were handicapped, dispose of it, because (there is a statistical possibility that) the test for handicap may not be right, and you sacrifice more potential life. But there's something I just can't do about that, I can see the logic butI." Likewise, the more she learned about abortion the more she felt "none of (the argument in favour) is satisfactory, but it has to be a better option than not allowing it". Because these issues are so close to people's hearts, she thinks a general consensus will never be reached. However carefully she talks in public her office has a file "under H for hate mail".

Any illusions she may have had about the infallibility of the law and medicine were shaken early on. Convinced from the age of ten that she was going to be Perry Mason, she started at Glasgow University, aged 17, believing that lawyers could save the world, only to see the firm of solicitors she was working for in the holidays unable to clear a client they were convinced was innocent. Seeing also how difficult it was at the time for a woman to get into criminal law, she switched to jurisprudence. Then, at 24, working as the first legal researcher in Glasgow's forensic medicine department - which produced the standard textbook cited in all the Perry Mason stories - she was asked to initiate medical ethics teaching to law students. "Which was fine except there wasn't a subject." She based it on what law students told her they didn't know.

She recalls scathing encounters with doctors who saw a wee lassie telling them how to do their jobs. She was not angry at them but at the way the law seemed to bend over backwards to protect them. "The kinds of tests that we apply for example to judge medical negligence are very easy to satisfy if you're a doctor and very difficult if you are a patient. At the same time doctors were being told that they were at huge personal risk (of being sued) and they were terrified of their patients, which was just nonsense. Now I watch them go through the MPhil course and write dissertations on how the law is too nice to doctors."

Patients now expect more control over their treatment, right up to the moment of death. In a recent book based on research at Glasgow she came out in favour of physician-assisted suicide, although the British Medical Association's recent vote against it does not surprise her. "The argument that they'll start bumping off granny because she's a burden is deeply entrenched in people's minds," she says. Her own view is based on the belief that underpins her work - that the patient must always come first. In cases of euthanasia the patient's wish to die must therefore be respected.

Until the public knows enough to make its own informed decision, medical bodies, indeed governments, are unlikely to move to reform the law on issues such as euthanasia. The good news is that we are moving towards that position. "People do know more now. There are enough courses, people see enough cases on the telly. They are less intimidated and, to their credit, very much more aware of what's going on."

THE FAMILY WHO KNEW TOO MUCH

Sheila McLean interviewed a woman some years ago for a BBC Scotland radio series on genetics. The woman's mother had recently died of suspected Huntington's disease, a progressive dementia which the child of a sufferer has a 50:50 chance of developing. The woman wanted to know if she would develop it, and felt her children had a right to know.

She was tested and given the all clear, but told the disease was in her family's genes. Her dilemma was then whether to tell her siblings. Eventually she did tell them, they were tested and she turned out to be the only family member who did not have the Huntington's gene. The knowledge destroyed her family. On the one hand they were delighted that she was not going to die, but they might, and if they were a carrier of the Huntington's gene their children might also be. They felt angry that they had it and she did not, and she felt guilty because she was OK and they were not.

Traditional lectures are out of date when it comes to introducing students to such dilemmas. "Our approach is to always try to present both sides, why is something good and something bad?" says McLean. Undergraduate lectures in medical ethics have been largely replaced by a process designed to help students develop the ability to think for themselves without prejudice and argue their case with respect for the other party's point of view.

Every two weeks, armed with reading material and a list of questions to consider, law students plead a "case" in front of a practising advocate who acts as an judge. Situations which do not lend themselves to this sort of treatment due to the paucity of legislation are dealt with in mock House of Commons committee sessions. In a variation on the Huntington's case the woman's doctor might be told that her sister is desperate to conceive and about to enter a lengthy and expensive IVF programme. How would the information affect the doctor's duty of care and promise of confidentiality?

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