The price of precaution

by Dr Michael Fitzpatrick; Article 4 April 2001

'The importance of precautionary measures should not be played down on the grounds that the risk is unproved.'

The prompt official endorsement of The Report of the BSE Inquiry (also known as the Phillips report) marked the acceptance of the precautionary principle as a central tenet of New Labour's new style of government. The public responses to the foot-and-mouth epidemic and other recent events reveal the high cost of this principle - a cost that far exceeds that which can be calculated in monetary terms.

Though there are many definitions of the precautionary principle, it can be reduced to two basic propositions:

-- 'Always look on the dark side of life': those in a position of authority in government, science or business should always anticipate the worst possible outcome of their actions, and proceed with appropriate caution and responsibility.

-- 'The fearful customer/voter is always right': whether or not there is a rational basis for popular anxieties, the public should be involved in the process of deciding the appropriate precautionary measures. It is not surprising that the BSE epidemic has acquired such a central significance in the institutionalisation of risk awareness in British society. This epidemic was a case in which the nightmare scenario (or at least an approximation to it) actually happened.

First, a new and deadly disease emerged in cattle; then it - apparently - jumped the species barrier to cause variant Creuzfeldt-Jakob disease (CJD) in humans. Fortunately, the condition was rapidly identified in cattle and effective measures taken to curtail it; it is also fortunate that the disease, though devastating in its effects, has (so far) affected very few humans.

In the history of the relationship between mankind and nature, the BSE/CJD story is unlikely to merit more than a footnote. Ever since neolithic man began domesticating animals, these have been a potent source of infectious diseases. Measles, mumps, whooping cough, smallpox and tuberculosis all crossed the species barrier at some stage, with intermittently catastrophic consequences (2). In the history of the relationship between mankind and nature, BSE/CJD is unlikely to merit more than a footnote .

When these diseases first appeared in man, they produced epidemics with a mortality rate of around 90 percent. William McNeill, author of Plagues and People reckons that it took human society between 90 and 150 years to adjust to each new lethal disease, as its virulence slowly abated (3). Some of these infections became familiar and relatively mild conditions of childhood. Yet in the current climate of social and political malaise, the emergence of a highly localised and small-scale disease like BSE has reinforced a fatalistic and despairing mood.

In recent years there has been a ready audience for promoters of doomsday scenarios resulting from global warming, nuclear radiation, antibiotic-resistant bacteria, AIDS and numerous other environmental dangers. Whereas the most trivial incident - like the UK floods in autumn 2000 - can be readily incorporated into wider visions of apocalyptic gloom, no amount of scientific evidence that contradicts perceptions of imminent disaster has much impact on public opinion. In recent months, the free-floating anxieties catalysed by the mad cow panic have found new attachments in scares about mobile phones, electricity pylons, and the MMR vaccine.

The most immediate consequence of the ratification of the precautionary principle is that it encourages a tendency to overreact to events that trigger popular anxieties. This was already apparent in the numerous spin-off scares arising from the mad cow panic: the ban on beef on the bone, the fear of contaminated polio vaccines or blood transfusions, the suspension of surgery on tonsils until disposable instruments are available.

One train derailment led to the prolonged paralysis of the whole rail network. An outbreak of foot-and-mouth disease has resulted in the paralysis of much of the country, and has now led to the postponement of the general election. If the economic cost of the precautionary measures far exceeds that of the problems that they are responding to, the cost in terms of the demoralisation of society is even higher. A more insidious result of the precautionary principle is the way it elevates public opinion over professional expertise and subordinates science to prejudice. One of the distinctive features of the BSE inquiry was the prominent role it gave to the relatives of victims of variant CJD.

Though this innovation attracted little comment and less criticism, it was a significant development, reflecting the now familiar New Labour preference for sentiment over rationality. It is not at all clear how the experience of losing a relative, however close, to CJD, yields a privileged insight into the nature of the disease, or any greater wisdom about how to prevent or treat it than any member of the public. Though relatives have been caring for sufferers from motor neurone disease and multiple sclerosis for many years, they have never been regarded as a source of specialist knowledge on the epidemiology, pathology or therapeutics of these conditions.

While official recognition of the families of victims reflects public acknowledgement of the particularly distressing effects of CJD, their involvement in the wider aspects of the inquiry implicitly devalues scientific, clinical - and even political - expertise.

Yet the involvement of families of victims or sufferers themselves, not only in public inquiries, but in the formulation of public policy and decisions over research priorities, has become a key theme of government policy. So relatives' groups have played a major role in the inquiries into the Bristol children's heart surgery unit and the scandal over retained organs at Alder Hey hospital in Liverpool. In all of these cases, the government presents public involvement as a democratic and empowering development. But how democratic is this much-vaunted process of dialogue and involvement?

The object of medical research is to discover something about the cause of a disease, not to feel the pain of disease sufferers

The chairs of these inquiries, and the other key members, are all appointed by the government. The representatives of the relatives or patients appear to be largely self-appointed and it is unclear how accurately they reflect the views of others. What is striking in all the big inquiries mentioned is the convergence between the views of the officials presiding over the inquires and those of the relatives' groups. At the time of the publication of the Alder Hey report, for example, the government's chief medical officer, Professor Liam Donaldson, was happy to appear at a press conference with representatives of the parents' group. The prominent figures in these groups often appear to have closer links with the key players in the medical and political establishments - and the media - than they have with other relatives or patients.

No doubt there is an element of manipulation in the relationship between the government and groups of relatives and sufferers of particular conditions. But there is also a real abdication of responsibility in the official promotion of popular participation in policymaking. This is particularly apparent in the proposal to give patients' groups a prominent role in deciding on priorities for medical research. No medical conference, no matter how esoteric the subject, can now be considered complete without the presence of groups of patients or their relatives.

For example, plans for a major programme of research into autism, organised jointly by the Department of Health and the Medical Research Council, insist on the involvement of groups of parents and sufferers (4). Project coordinator Professor Eve Johnson says that 'consumer input is vital so that lay people can contribute to the process and feel that the review has taken account of their concerns'. But the object of medical research is to discover something about the cause of a disease and how to prevent or treat it - not to feel the pain of disease sufferers and their families or to patronise or indulge them by pretending that the experience of disease confers special insights into it.

It is precisely because the appearances of nature are deceptive that we need the methods of science - which commonly yield findings which contradict popular impressions and established traditions. Indeed, we owe much of the scientific development of the past three centuries to the fact that scientists were prepared to take a stand against 'consumer input' and challenge prevailing prejudices. These cherished principles of science are jeopardised by the philistinism of the contemporary political elite, a trend towards which many scientific and medial authorities are, unfortunately, acquiescent.

Another problem here is that there are numerous groups in the field of autism, some of which staunchly advocate theories, such as the link with the MMR vaccine, or treatments, such as secretin, and other drugs and dietary regimes for which there is not a shred of scientific evidence. Though these groups may include some parents of autistic children, they are not representative of people with autism or their families, or accountable in any way to them. Some have a commercial interest in promoting their particular approach (lawyers pursuing MMR compensation claims, private doctors peddling secretin and other unproven remedies to desperate parents).

The logic of the government's populist policy is that resources will be diverted from potentially fruitful avenues into pursuing crackpot theories and folk remedies. In this way, research based on scientific judgement gives way to research driven by popular prejudice. The only beneficiaries of such an approach will be cranks, ambulance-chasing lawyers and quack healers.

The real threat to human health and welfare comes, not from any of the familiar candidates for bringing the world to a premature end, but from the precautionary measures resulting from the popular acceptance of these doomsday scenarios and from the mind-numbing impact of the psychology of risk awareness on society.