Patients in Research

December 6, 2024 by Doctor Vernon Coleman

The essay below is taken from The Health Scandal by Vernon Coleman, which was first published in 1988.

Patients in Research

When an eighty-four-year-old woman called Margaret Wigley died in a large hospital in Birmingham, after unknowingly taking part in a drug trial, many patients were startled that such a thing could happen in Britain in the 1980s. Most probably they thought that Mengele was the only doctor ever to have used patients for experiments without first obtaining their consent. But Mengele was just one among many thousands of doctors who have, over the years, used and abused their patients. Hundreds of far more eminent physicians and surgeons have done awful things to their patients.

What about the psychologist at Johns Hopkins University who did experiments with new-born babies? His work involved dropping new-born children just as they were falling asleep.

Or what about the psychologist who encouraged a small boy to befriend a pet rat and then made a loud noise every time the boy moved to pick up the rat. Soon the small boy, called Albert, began to cry whenever his pet rat appeared. Eventually the boy became so disturbed that he was frightened by just about anything and every­ thing. The researcher was devastated when the small boy was adopted and taken away from his laboratory.

Or what about the experiments conducted by Dr Myrtle B. McGraw of Columbia University in America? McGraw used a total of forty-two babies aged between eleven days and two and a half years in her experiments reported in the journal of Paediatrics. What did McGraw do with these unfortunate babies? She held them under water to see how they responded.

In her article she reported that 'the movements of the extremities are of the struggling order' and went on to say that the babies 'clutch at the experimenter's hand'. She also noticed, apparently with some surprise, that the babies tried to wipe the water from their faces. And she seemed positively amazed that 'the ingestion of fluid was considerable and the infant would cough or otherwise show respiratory disturbance'.

In Italy doctors have put drops into the eyes of women in order to study the formation of experimental cataracts. A professor in Milan gave children drugs to stop them making a natural recovery from viral hepatitis.

Spend an hour or two flicking through the world's medical journals and it is possible to find scores of experiments as foul and offensive as these. Over the years some of the world's leading researchers have taken part in experiments that would have made even Mengele blush with shame.

But until the death of Margaret Wigley in that hospital in Birmingham became widely known most observers probably thought that clinical trials endangering patients were rare in Britain in the 1980s.

Sadly, the truth is that experiments involving unwitting patients are commonplace in Britain.

Most such experiments are conducted in considerable secrecy, of course, and even when the results are published it is sometimes difficult to tell whether or not patients were invited to give their consent. But sometimes even when patients do give their consent there are genuine reasons for concern.

Take, for example, the case of Dr Richard Woodland. In 1984 the medical newspaper Pulse reported that Dr Woodland had for years used Electroconvulsive Therapy on his patients in general practice. According to the report he had given more than 10,000 treatments to his patients in Paignton, Devon, and then in London. At one time about one in seven of the patients on Dr Woodland's list were receiving treatment with ECT.

Dr Woodland used this controversial treatment for a number of problems and claimed it helped patients suffering from arthritis, indigestion, irritable bowel syndrome, and aphthous ulcers. He has admitted that he didn't always obtain informed consent from his patients but even when he did tell his patients what he was planning to do and when they did understand his plans, can his actions be justified?

Many other doctors think not. Dr Woodland has addressed meetings of doctors where the audiences have walked out on him. He has described his work as 'research' and has said that stricter controls on research would limit basic freedoms to practise medicine.

But what about the rights of patients? Like many other physicians Dr Woodland seems to me to put those rights fairly low down on his list of personal priorities.

Dr Woodland may be a slightly unusual doctor, but there are thousands of doctors practising in Britain today who regularly use their patients in experiments involving new drug therapies. In general practice, in particular, there are virtually no rules stopping doctors from using their patients for new drug trials. And since drug companies sometimes pay doctors quite generously for this work it is perhaps hardly surprising that so many doctors fall to temptation. Many of the patients who suffer unpleasant or serious side effects are never even aware that they have taken part in an experiment. GPs often fail to tell their patients when they are trying an entirely new drug. When the patient is asked to take part in a trial the chances are that his full, knowing consent will not be obtained. Too often patients agree to take part in experiments because they do not understand that there are safe and effective alternatives available; they do not understand that the doctor inviting them to be guinea pigs is using them for his own personal profit.

And the risks involved during drug trials can be considerable. In February 1987 the British Medical Journal published a paper which described how, when three doctors at the University of Manchester conducted a trial for a drug company three out of twelve paid volunteers became ill. That sort of level of risk is, in my view, by no means unusual.

In the past some medical research was undoubtedly essential. Without experiments no new products would have ever been marketed and no new treatments would have ever been devised. But I firmly believe that the only really acceptable experiments are the ones which involve patients who are genuinely ill, and for whom no available, suitable, useful treatment can be found. Under those special circumstances, if the patient agrees to try out a new drug, then the risks are acceptable. The patient can benefit from the experiment.

In the majority of experiments, however, a new product or a new treatment is tried for personal or commercial reasons. There are usually other, accepted treatments available but the doctor or drug company involved wants to do research that will help in the production of scientific papers and, maybe, help bring a new and potentially profitable product on to the market.

In the Journal of the American Medical Association in March 1986 there appeared an article entitled 'Mammon and Medicine: the Rewards of Clinical Trials'. The article was written by Dr Howard M. Spiro. At the start of his article Dr Spiro confessed: 'I could get most of my patients to participate in almost any kind of clinical study. They would swallow new drugs, receive infusions of calcium or glucagon, or even embrace oesophageal or rectal catheters because they had faith in my goodwill or, I now fear, because they wanted to please me.' Dr Spiro has seen the light. He now believes that patients should be told why they are being invited to take part in clinical trials. Sadly, many thousands of British doctors do not yet agree with him.

NOTE
The above essay is taken from The Health Scandal by Vernon Coleman. To purchase a new paperback edition of The Health Scandal please visit the bookshop on www.vernoncoleman.com or CLICK HERE

Copyright Vernon Coleman December 2024