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ACCOUNTABILITY FAILURE
& The BSE-CJD CRISIS
The public controversy and the science and technology in this crisis are moving on very fast - and one must keep in mind that the documents below may be quite dated already. The UK Government is in late 1998 still completing its own inquiry - and that is not covered here. But watch this space.
1) FtC & NARANG IN 1999 BSE LOBBY
2) Letter from
Dr S Dealler, The Independent, 19th November 1996
3) Parents for Safe Food, Briefing on BSE,
May 1990.
4) Geoff Hunt, ‘Some Ethical ground Rules for
BSE and Other Public Health Threats’, Nursing Ethics (Arnold)
1996 3(3), 263-67.
5) BSE, Vaccines & Manufacturer's Accountability,
Oct. 2000.
_______________________________________________________________________
Robert McGregor, coordinator of FtC's science, technology & environment network, reports:
Dr Harash Narang and I lobbied at the House of Commons on 20th July 1999 on the government's policy on the two issues of BSE-CJD and GM foods. Dr Narang is the whistleblower who lost his job at the government public health laboratories for his persistent warnings about BSE's linkage to CJD. For a long time he has been claiming that there is a urine test which could identify BSE/CJD. More recently, he has been arguing that the use of antibiotics in genetically modified (GM) foods could have long term cancerous effects on humans and animals. Progress, however, is frustrated by the seeming reluctance of the establishment to engage properly with these claims.
A request has been passed to David Hinchcliffe MP, chair of the House of Commons Select Committee on Health, that the committee deal urgently with certain issues. The request is signed by Dr Harash Narang, Mr Ken Bell MBE, Dr Colin Leakey & Rob McGregor (for FtC). The issues are:
Sir,
Could I indicate my agreement with the article (15 November) by Andrew Puddephatt, director of Charter 88, on the democratic problems that permitted the BSE crisis. As one of the few medics in the field able to speak out (no family, no mortgage), I have been denied information and put down as a crank by MAFF. All the way through it has seemed as if only internal ideas and decisions could be correct and that anything that suggested human risk was invalid. Misinformation was put out from central sources: the Public Health Laboratory Ser'vice was kept out from something that was clearly a matter for experts in the human epidemiology of infectious disease, and other governments and advisors were given inadequate data with which to make decisions.
Things must improve: research must be liberally funded (more than £100 million is needed on independent research). For instance, it is essential that we find out the number of people who are currently incubating BSE, as planning for the future and blood transfusion risks must be considered. The Medical Research Council recently turned down the the application to do this. At a recent conference I asked 26 drug companies if they were considering looking for a CJD treatment. None were. The real change took place when Professor John Pattison became the chairman of the Spongiform Encephalopathy Advisory Committee [SEAC]. He is looked on as an honest and open person by all groups and his presence has meant that external ideas are at least being considered. Pattison has been the hero that got valid information through to the Government, but under the current system of democracy he might never have arrived.
Dr STEPHEN DEALLER, Consultant Medical Microbiologist, Burnley General Hospital, Lancashire
BRIEFING ON BOVINE SPONGIFORM ENCEPHALOPATHY, May 1990 (Sponsored by CheckOut)
INTRODUCTION
Bovine Spongiform Encephalopathy (BSE) commonly called 'mad cow disease' is still making the news. Most recently, concern has arisen that the disease might have affected a cat. Just what is going on? Is the press getting the problem out of proportion? Or is BSE a serious worry? what foods are affected? Is It more of a worry for children? And is there anything you can or should do to minimize the risks? This briefing paper has been produced by Parents for Safe Food to help answer these questions.
WHAT IS BSE?
BSE is a disease of the nervous system affecting cattle. It is a relatively new disease, having first been diagnosed in November 1986 by the Veterinary Investigation Services of the Ministry of Agriculture, Fisheries and Food (MAFF). BSE was quickly classified as a new variety of a family of degenerative diseases known as spongiform encephalopathies. They are inevitably fatal.
More is being found out about BSE all the time. In cows, the symptoms include the cow staggering about; pawing the ground; and being generally nervous. As the brain rots, the animal grows excitable. If not put down, it collapses, fails to eat and wastes away.
BSE is called a spongiform disease because the brain becomes riddled with tiny holes giving it the appearance under a microscope of a sponge. BSE has a long incubation period. For the disease to manifest itself and eventually kill the cow it may take anything between 2 to 8 years.
HOW DOES BSE SPREAD OR DEVELOP?
This is the big question. BSE is one of a spongiform encephalopathy family of diseases, which include Scrapie, known in sheep for 200 years in the UK, and Creutzfeld Jakob Disease (CJD) a rare human form. The human form is also known as Kuru where it was once prevalent among the Fore tribe of Papua New Guinea. In Kuru, it is generally thought that cannibalism was involved in spreading the disease. With scrapie, there is evidence that it spreads by sheep eating each other's placenta, grazing in contaminated pastures, and inheritance.
CJD is less clear, though one strand of research suggests it runs in families. CJD is rare, with one estimate at an incidence of 1 case per million humans, worldwide.3 In April 1990, the Government set up a study into the possible link between BSE and human equivalents. An expected 50-60 cases a year will be referred to Western General Hospital in Edinburgh, which has established a research unit specializing in CJD, but only 20-30 per year are expected to be proven to be CJD.
There are a number of factors implicated in the spread of BSE. The main focus of research attention is on sheep remains infected with scrapie being processed (or 'rendered') into cattle feed, thereby spreading the scrapie-like disease to cattle. There are 41 rendering plants or factories which processed 1.3 million tonnes of raw material in 1988, turning it into 350,000 tonnes of meat and bone meal, and 230,000 tonnes of tallow. Cattle, which are vegetarians by nature, have become unknowing carnivores.
Spongiform encephalopathy agents are unconventional. They are very hard to kill off. Health Authorities are advised to sterilize surgical instruments which have been used on CJD patients for 18 minutes, at 134 degrees Centigrade in an autoclave (a kind of pressure cooker) at 30 psi HTAT. That is some sterilization! Scrapie is resistant to ionising radiation and to many disinfectants. In short, it is a very powerful agent.
There is at present (1990) no evidence that BSE spreads 'vertically' from mother to calf, for instance in the womb, but this cannot be ruled out. The Government's approach to BSE has assumed that contaminated feed is the sole cause. Parents for Safe Food is wary of accepting this assumption. It is also strongly suspected that contaminated meat has already got into food for humans.
WHY HAS BSE EMERGED NOW?
Until more is known about the disease, this question cannot be answered with 100% certainty. Researchers believe that changes in feed technology are implicated. In 1981/2, the use of hydrocarbon solvent extraction methods was banned from use in the rendering industry. As a result, steam heat was no longer used to recover the hydrocarbon solvents. It is thought that these and other changes meant that the scrapie agent was no longer killed in the feedstuffs fed to cattle. The feedstuff industry is co-operating closely with the Ministry to clarify what has gone on.
WHERE IS BSE FOUND?
Unfortunately this is a British disease. It has been found all over Britain, but it has a higher incidence in Southern Britain. It is more common in Dairy herds than in suckler (or beef specialist) herds. It has emerged, though is rare in Eire. The common factor, according to MAFF researchers, is only one thing: the use of proprietary concentrates or feed supplements.
No cases have been recorded outside the United Kingdom and Eire, but there have
been unconfirmed reports of BSE in the USA.
WHAT ABOUT PETS?
The Pet Food Manufacturers Association, representing the large processors of petfoods, instituted a voluntary ban on offal in petfoods in June 1989. They also have a policy of only using meat from healthy animals which have been passed as fit for human consumption. It will be at least a year before the case of the Bristol cat can be proven to be a BSE-type spongiform or not. If you have any doubts we suggest you contact your vet.
WHAT IS BEING DONE?
Outside Britain, the reactions have been simple. Many countries have put up barriers on UK imports. There are now bans on British beef, cattle semen (for artificial insemination) and live imports of cattle of over 6 months, and on cattle for breeding purposes. The European Commission has made BSE a notifiable disease, to try to monitor it if it spreads to the continent.
Inside the United Kingdom, controls on contaminated beef have been put in places. Offal, including brain and other central nervous tissue is now banned. Contaminated animals are burned. Parents for Safe Food says that the delays in making these controls was scandalous. Besides threats to human health, these Government delays have now threatened a major British export market in live animals, breeding animals and semen. Countries initiating bans in some form include: USA, Australia, New Zealand, Finland, the USSR, Israel, Denmark, West Germany, the Netherlands and most recently the European Community.
The Ministry is now taking BSE seriously, but unfortunately cuts in the MAFF Veterinary service means there are fewer officials to go out on the farms on consumers’ behalf. in 1979, there were 580 MAFF vets. By 1988 there were only 444.
WHAT SHOULD HAVE BEEN DONE?
We are now in a giant experiment. Government could have instituted a rigorous containment or quarantine policy in 1988 when BSE first became recognised as a very serious threat.This would have meant a package of actions.This would have probably included:
To have done this in 1988 would have been expensive enough. Now (1990), with one in 1,000 cattle affected, the implications for UK cattle breeding are potentially horrendous. Drastic action might still be necessary. As consumers we should be prepared to contribute to the debate. In principle, preventive measure should take priority over trade considerations.
Critics argue that BSE and its spread is further evidence of the mistaken agricultural policy adopted in the postwar period. It is time to change agricultural direction - off the agrichemical, intensive treadmill and onto a more sustainable system, such as organic farming.
CAN YOU BELIEVE GOVERNMENT?
The Government and MAFF are in a difficult position. One the one hand, they do not want to over-react or cause panic. On the other, if they dont set up proper public health controls, they will be in dereliction of their duty to protect us and to ensure that food, as the Food Act 1984 puts it, is ‘of the nature, quality and substance demanded.’
Before Dr Tim Holt questioned MAFF’s view in the British Medical Journal , MAFF had been saying that there was no threat to human health from BSE. MAFF had refused to make BSE a notifiable disease on the ground that there was no link between the animal diseases scrapie or BSE and the human diseases CJD or Kuru. As in all large organisations, there are bound to be arguments and different positions on what to do. Parents for Safe Food is concerned that MAFF’s Public Relations reflex appears to play down the risks, when it should have acted speedily to cut all possible sources of risk.
MAFF's actions have been too little, too late. For instance in 1988 MAFF announced 50% compensation to the farmer if a cow was found to have BSE. Critics said this was penny-pinching and an inducement not to get a suspected cow inspected. MAFF only made 100% compensation in February 1990, two years too late. In the first two weeks after this change, unconfirmed cases of BSE cows nearly doubled. This suggests, as Trading Standards Officers have alleged, that contaminated cows were being put through markets.
MAFF also wishes to down-play the fear of BSE jumping species. Yet its own research shows that BSE can be induced in mice by feeding them BSE infected tissue. MAFF continues to stonewall questions about the advisability of allowing animal protein to be fed to poultry and pigs. One huge feed manufacturer while reporting that it did not use animal protein in its feeds, has accused others of doing so.
MAFF's actions assume BSE comes only from feed. What if it doesn't? Scrapie can spread by 'vertical' transmission between animals. Minks spread it by biting. At least one vet has said MAFF should 'err on the side of caution'.
On a positive note, MAFF is now releasing funds for the necessary research. £1.3 million was allocated in 1989-90, and an additional £2.2 million in both 1990-91 and in 1991-92. This will drop to £1.7 million in 1992-93.
WHAT YOU CAN DO
Parents for Safe Food reminds you that it is your right as a consumer and customer to know what goes into your food. Don't either panic or be passive. Act.
REMEMBER: In public health matters, there is a choice between containment and prevention of diseases. Ideally both options are followed. It is possible that the time for prevention has now (1990) gone. Containment of BSE becomes the only option, in which case it must be properly enforced.
FURTHER INFORMATION:
Parents for Safe Food, Britannia House,1-11 Glenthorne Rd, Hammersmith, LONDON W6 0LF.Tel. 0171 748 9898.
Some ethical ground rules for BSE and other public health threats, Nursing Ethics (1996) 3(3) pp. 263-267
Geoffrey Hunt
Dr Dealler's article [in same issue] raises a number of ethical points that merit informed debate. BSE is already an epidemic in cattle and, since cases have appeared in a large number of other countries, it may become a bovine pandemic. In our present state of knowledge about the disease we cannot be sure that it is transmissible to human beings. However, the circumstantial indications are sufficiently significant to force upon us the real possibility of a human epidemic or pandemic of the disease in the next century. To ignore or minimize these indications could be catastrophic. HIV/AIDS has surely taught us a lesson about erring on the side of caution in a situation such as this.
The difficulty is that to act vigorously and immediately upon these indications could cause damage to the beef industry and to the livelihoods of all those who depend upon it. Here we have an ethical dilemma. The trouble appears to be that we hardly have enough information to know what to put into the balance so that we could choose the least harmful scenario on a rational basis. We are assuming of course that rational decisions are possible in a situation in which big interests are at stake.
However, the dilemma has been framed too abstractly here. As with many dilemmas, the real point is not some 'theoretical' resolution to be made by 'us' or 'them'. It is rather a 'methodological' question of how to go about seeking a resolution, and, having uncovered that method, to work for it and through it. What we should be focusing our minds on are the ground rules for dealing with public health dilemmas of this nature. One assumption that needs to be challenged is that this is a matter to which the scientific and technical experts alone (or perhaps the Government alone) could have an answer.
In order to frame a few ground rules, let us begin from the fundamental premise of public health that is already widely accepted:
Public health is what we, as a society, do to assure the conditions for people to be healthy. This requires that continuing and emerging threats to the health of the public be successfully countered. These threats include immediate crises, such as the AIDS epidemic, enduring problems, such as the aging of our population and the toxic by products of a modern economy, transmitted through air, water, soil, or food.(1)
The first sentence especially interests me, with its emphasis on 'what we, as a society, do' and on the 'conditions' for health. This means that public health is the concern of everyone, and that what everyone is or should be concerned about is what sort of social arrangements facilitate or promote health. It follows from this that the balance of risks, costs and benefits is not a matter for scientists, for government, for the beef industry (farmers, abattoir owners, butchers, meat exporters) to battle out in terms of their own interests. What scientists, farmers, government and meat exporters believe and do are also matters of social concern. A social issue should be tackled socially. This means involving open and informed debate across a wide spectrum of the public, occupational groups, professionals and government officials. After all, if public confidence in the Government and/or the beef industry is lost - if at some time, despite official reassurances, the public refuses to eat beef and even abattoir and similar workers refuse to handle it then such a debate will have been overtaken by events.
Western society and its industrial methods have probably created the BSE problem; therefore this society should accept the democratic political tradition of the rule of law and due process, freedom of information, representation and democratic pluralism. Yet we tend to confine this traditional mode of thought to the political process. It is time, in all consistency, to extend it to the economic and industrial process. Let us look at the BSE dilemma in terms of three well established principles of the political process: freedom of information, representation and professional autonomy.
Freedom of information
It is a truism to say that epidemics are a potential threat to everyone. The corollary is perhaps not so obvious; everyone has a right to information about epidemic threats (however weak or indistinct that threat may be), the dilemmas that attend them, and the possible courses of action in dealing with them. There should be a presumption in favour of a public right to know, which means that a government department or a special interest group has an onus on it to justify the withholding of information.
In the UK there is still no 'Freedom of Information Act' {Such an Act is now - 1998- on the way]. The prevalent disposition of government departments is still that of unaccountable secrecy.
Information about BSE is sometimes vague, conflicting or simply absent. The UK's Ministry of Agriculture, Fisheries and Food (MAFF) has 'declined to publish estimates of the number of infected animals that we continue to eat'.(2) While many farmers believe BSE is increasing, the MAFF states that it is falling. 'Thus powerful commercial and political forces could have contributed to a substantial under-reporting of cases since 1992 (Dealler and Kent, p 5)~.2 Since it is easy to become dogmatically attached to a particular theory (e.g. that BSE is transmitted in cattle only by infected feed), especially when such a theory serves a particular interest group, it is vital that there is a free flow of information and open discussion of all the known facts, hypotheses and theories.
There are many other worries about inconsistencies in official positions on the possible dangers of BSE. Thus, while we are told that it may be dangerous to touch certain bovine tissue (such as liver) we are also given the impression that it is all right to eat it (in burgers etc.). Also, abattoir workers are subjected to much less stringent guidelines on handling offal than certain other workers (in laboratories, butcher's shops) although they are exposed to much greater risks. As Dr Dealler points out elsewhere, it is hard to see how this could be ethically justified (Dealler and Kent, pp. 8-9).(2)
In the absence of government and professional support (legislation, regulation) for freedom of information, special interests take over and national, European or international legislative provisions may be difficult or impossible to implement. Thus, the EU decided to limit the export of British cattle. The cattle were to be certified and data about their history was to be computerized for this purpose; but then, 'markets in the UK seemed to stop demanding information from farmers as to whether their herd was infected' (Dealler and Kent, p 9).(2) What has the Government done about this?
Without freedom of information and proper public accountability there is a climate of secrecy and fear, in which only the 'whistleblower' will risk victimization. Veterinary surgeons were put in an impossible position. How could they certify when they did not have information? One UK vet was allegedly sacked for refusing to sign certificates because she had insufficient data.(3)
Representation
Part of Dr Dealler's argument is that the official discussion is not an ethically- informed one; that is, it is not the kind of discussion that might go on, for example, in a good local research ethics committee (LREC). If the NHS Management Executive thinks fit to make the requirement that health authorities in the UK should establish LRECs, and is no doubt quite right in this, should the appropriate government department (perhaps MAFF?) take a similar initiative to encourage ethical appraisal of epidemic public health threats, including BSE?
Again, if there is a good case for a national ethics body to consider human embryo research and fertilization (which the UK actually has) there is at least as good, and possibly a better, case for a national panel on the ethical and legal implications of BSE.Such a panel would involve, besides the scientists, public health doctors, and government advisers, representatives from the beef industry, the law, consumer groups and the public, schools, the professions allied to medicine, and the Church, as well as professional ethics specialists. It might also be helpful to have the experience of representatives from groups that support the victims of HIV/AIDS and neurological diseases such as Alzheimer's disease and Creutzfeldt-Jakob disease. Such a panel could advise parliament, the MAFF, the EU and any other relevant government and intergovernmental bodies.
Professional autonomy
Despite recent trends to the contrary, it has long been accepted that professional judgment should be respected and that governments in particular should not interfere in the exercise of such judgment. ProfessionaLs of all kinds are beginning to see that ethics is not simply about the one-to-one relationship with the client. The 'public service ethic' has always demanded that professionals express their social concerns (especially, perhaps, public health professionals).
Many community and school nurses, health visitors and midwifes are already aware as individuals that BSE may be an especially pressing issue for the health of babies and children. If it is already too late for many adults, it may still be possible to do something about children. Professional health care organizations should perhaps reflect on the fact that, with the dearth of clear guidance, some schools have already stopped including beef dishes on their lunch menus, and consider whether there are any initiatives that they should be taking too.
I propose the following questions for Nursing Ethics readers to pose to professional associations and regulatory bodies in health care in the UK, Europe and beyond:
The current professional situation in the UK
I informally contacted three major UK organizations of professions allied to medicine to ascertain how far they had shown an interest in BSE. The Royal College of Nursing contact said that, although they had organizational structures to deal with questions of social and environmental policy, and had debated subjects such as the contraceptive pill, vitamin K, cot deaths, HIV/AIDS and covert video surveillance of mother and child, the subject of BSE was 'yet to be debated'. It appears that no formal initiative has been taken at the time of writing (end of February 1996). However, the Royal College of Nursing will be raising the question of freedom of health information in general terms at its next congress.
A spokesperson at the Health Visitors' Association (a branch of the Manufacturing Science Finance Union) told me that it had received expressions of concern from its members. One health visitor wrote:
My main concern is in the area of beef consumption and USE: the issues are now complex and disturbing... The HVA should keep an independent voice in the interests of public health and call for a public debate into this issue.(4)
The HVA wrote a letter to the MAFF on 18 December 1995 asking for a briefing, since there was a 'vacuum of information'. It received no response from the MAFF, so followed up with a second letter in February 1996. At the time of writing there has been no response to this second letter. The spokesperson explained that many health visitors were in a quandary because beef is rich in iron and traditionally recommended for iron deficiency. They were desperate for official guidance. The HVA will continue to pursue the matter.
A similar approach to the Royal College of Midwifes revealed that there has been no thought given to the implications of BSE. My contact pointed out that all midwifes are concerned about the dietary requirements of pregnant women and that some had private concerns about BSE (and some will no longer eat beef), but there was as yet no informed discussion that might lead to a policy position.
Recommendations
I conclude by recommending the following:
References
1) Institute of Medicine, Committee for the Study of the Future of Public Health. Washington, DC, 1988:19. Cited in: Draper P ed. Health through Public Policy. London: Green Print, 1991, p. 9.
2) Dealler SF, Kent JT. BSE: an update on the statistical evidence. Br Food J 1995; 97(8): 3-18.
3) Erlichman I. Vet sacked in 'BSE-free' cattle clash. The Guardian, (UK) 1994, 14 Dec; p. 3.
4) Jones K. Letter in Health Visitor 1996; 69(2): 55.
Editorial Note: This article was accepted for publication in Nursing Ethics for publication just before the BSE 'scare' erupted and the UK Government admitted that humans may have become infected already.
How accountable to the public is the medicines and vaccines industry? In October 2000 it was revealed that children were still being given oral polio vaccine using material taken from cows which may have suffered from BSE, thus exposing these children to the risk of a slow death from new variant CJD. Remaining supplies of the vaccine had to be recalled. Officials announced that the risks were "incalculably small". But do they actually know how great the risks are? On what basis are they calculating the risks - they have not told us. What we now told, 14 years into the BSE crisis, is that about 35 million doses of the vaccine produced by the company Medeva between 1991 and 2000 have been given to small children and others. This accounts for one-third of all polio vaccines administered in the period. Yet the use of cow materials in vaccines has been prohibited by guidelines since 1989. The guidelines become law next year. (The BSE inquiry reports shortly.) There have so far been eighty four victims of nvCJD in UK. Vaccine production has used fetal calf serum, from pregnant cows, to help grow cells using different polio strains. The giant medicines firm Wellcome put this vaccine on the market in 1989, but in 1991 it was bought by Medeva, and this then became part of Celltech. Celltech says it had "relied on assurances from Wellcome" that the material came from overseas cattle.
Michael Tibbet, chairman of the Human BSE Foundation, has spoken out: "After all these years it still looks as if we have not learned any lessons. It transpires the Dept of Health didn't check out these companies to proper standards." (Guardian, 21-10-00) What this means is that the voluntary measures agreed with the drug industry failed to keep dangerous cow material out of vaccines. The regulatory system has not been working. Inefficient bureaucratic government and profit-motivated industry cannot serve our interests - public participation and freedom of information are essential.
UPDATE:
For an excellent overview of the role of scientists in the developing story
of BSE-CJD see the detailed two page article in Laboratory News, December
2000, by Mark Burgess.
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