The high price of human guinea pigs
This year marks the 50th anniversary of the publication in 1967 of Human
Guinea Pigs, an anthology of the cruel, dangerous and often purposeless experiments being carried out – in leading academic medical centres across Britain – on infants, pregnant women, the mentally ill, the old and the dying. Thus, in one typical procedure, the participants were requested to exercise on a standing bicycle with a tight mask fitted over the face, while a thin catheter, inserted through a large bore needle in the arm, monitored the pressure within the heart.
Not a pleasant experience for anyone but, as the book’s author, Dr Maurice Pappworth, pointed out, the subjects were all seriously ill, suffering from cancer, anaemia and various forms of lung disease. The roll call of those responsible for initiating or carrying out these experiments (and he mentions 125 by name) included some of the most eminent physicians of the time. They were scandalised. “This book can only alarm those whom doctors seek to provide relief for the diseases that cripple or kill them,” observed Sir Christopher Booth, professor of medicine at London’s Hammersmith Hospital. Inevitably, Dr Pappworth paid a high price, being ostracised by the medical establishment until almost the end of his career.
Those eminent physicians were, however, undoubtedly in the wrong. In her recently published biography, The Whistle-blower, the late Joanna Seldon – Dr Pappworth’s daughter – describes how his shocking revelations eventually led to the setting up of Research Ethics Committees to safeguard the public against being experimented on in the name of medical progress.
For her father, she points out, the central issue was that of “informed consent” – the imperative that doctors, in their dealings with patients, should take reasonable and appropriate steps to ensure they properly understand the purpose, benefits and risks of any proposed intervention. All nowadays, one might hope, would concur.
Still, Dr Pappworth’s stance remains as relevant as ever for, as noted in this column before, the crucial matter of informed consent has recently resurfaced in a different guise. To be sure, surgeons are required by law to obtain written consent for any proposed operation, but there is no similar obligation for doctors when initiating, for example, long-term drug treatment to explain the specifics of the chances it will be of benefit, and the side-effects it might cause. Thus, while the merits of blood pressure-lowering drugs might seem self-evident, when it is explained to those with mild hypertension that they would prevent a stroke in just three per cent of those taking them (ie,
97 per cent would do so to no good purpose), more than half would decline. Ditto, no doubt, other widely prescribed medications.
Is flu a side-effect?
The conundrum of the gentleman woken in the early morning feeling as if he has the flu (“aches and pains, feverish and generally unwell”) that improves gradually throughout the day has prompted a couple of most pertinent suggestions.
First, noting the gentleman in question is taking blood pressure-lowering drugs, a couple of readers point out that this pattern of symptoms is a recognised adverse effect of the anti-hypertensive Ramipril.
“I would take it at night, sleep for eight hours and wake feeling like I had the flu that wore off after a couple of hours,” writes one reader.
Next, a long-standing sufferer from fibromyalgia, with his typically stiff and tender muscles, reports that he knows he is going to have a “bad day” if he wakes feeling feverish, headachy and scarcely able to move – all symptoms that tend to improve as the day progresses and he gets moving.
Email medical questions confidentially to Dr James Le Fanu at drjames@telegraph.co.uk
Participants exercised on a bicycle, with a tight mask over the face