Engineering of consent to human embryo cloning
Why did the British Parliament change the law?

Summary

In January 2001, the UK parliament voted to allow research on embryo stem cells. The news about this decision was reported as if it was an easy decision, suggesting that the majority agreed. Yet other examples suggest immense disquiet and unease among the general public, including among parliamentarians, in Britain about issues of life and death; sickness and health; and about doctors and scientists. This presentation at "Diskurs, Macht, Biomedizin" (Discourse, Power, Biomedicine) conference at Institut für Pölitische Wissenschaft, University of Hannover illustrates how, in anticipation of such unease, as well as because of growing distrust in scientists and the government, many discussions and debates about embryo cloning and further embryo research have been carefully channelled in certain directions in an attempt to ‘engineer consent’ to such research.

Contents

• Introduction
• Part 1: Life and Death
• Part II: Engineering Consent
• Part III: Did it work? Why did the parliamentarians vote as they did
• Part IV: What next for Britain and Germany

Introduction

My talk today is centred on the recent decision of the British parliament to change existing legislation so as to permit embryo cloning -- or rather, to be more accurate, to permit research on embryo stem cells, the cells which are believed to have the potential to develop into any of the 200 or so different types of cell in the body -- blood, bone, muscle and so on. The main rationale given for this research is to develop treatments and cures for people whose organs fail or become damaged. Diseases which involve the degeneration of the nervous system -- such as Parkinson's and Alzheimer's -- are those mentioned most often and as the first candidates for 'stem cell therapy'.

The news about this decision to change the law has been reported, particularly outside of Britain, as if it was an easy one, a clear-cut case. The parliamentarians -- those in the lower house, the House of Commons, who voted in December last year, and those in the upper house, the House of Lords, who voted in January -- are said to have voted 'overwhelmingly' to change the law, to have voted by 'an unexpectedly large majority', 2 to 1 in favour.

These votes might suggest that parliamentarians were completely happy with the decision -- and would be puzzled or even disagree with comments such as those of the deputy chair of the Reichstag's ethics committee on the British decision: "To breed a human being, only to kill it, disembowel it and impregnate something with it - that's basically cannibalism".

In fact, I contend the opposite. I would argue that there is immense disquiet and unease among the general public at the moment in Britain, including among parliamentarians about issues of life and death, about sickness and health, about doctors and scientists. What I will try and do in the next half an hour is to:

• give some examples of this unease;
• illustrate how, in anticipation of such unease, as well as growing distrust in scientists and the government, the discussions and debates about embryo cloning and further embryo research have, in my opinion, been carefully channelled in certain directions in an attempt to 'engineer consent' to such research;
• consider whether it worked? Is that why the parliamentarians voted to change the law?
• and finally some brief reflections on what next.

Full text

Part 1: Life and Death

First, then, the disquiet about life and death. The media -- the newspapers, television and radio -- have all over the past few months explored these issues. These are some headlines just within the last few months:

1. they were treated like old cars, to be stripped for spare parts before being tossed away.
2. thousands of patients are suffering and dying for want of treatments and drugs.
3. he got rid of hundreds of patients who were going to be gone soon anyway.
4. we don't treat the living or the dead with respect.

All of these headlines could be about embryo cloning and embryo stem cell research - but they weren't said in that context at all.

1. "They were treated like old cars, to be stripped for spare parts before being tossed away."

   The first quote - about stripping bodies of their organs - comes after a government-sponsored enquiry into the practice of taking the body organs from children who died in hospital and selling them on without the consent or knowledge of their parents. It had come to light that this was taking place in two hospitals, one in Liverpool, one in Bristol. The enquiry, however, looked into the practice into some 200 hospitals throughout the country. One newspaper commented "Those doctors who have lost all respect for the dignity of death certainly won't respect the value of life."

2. Thousands of patients are suffering and dying for want of treatments and drugs.

   This is not about those who are dying from Parkinson's, Alzheimer's, heart disease, diabetes, spinal injuries -- the conditions which stem cell therapies are supposed to treat -- but about cancer. Depending on the type of cancer, Britain has some of the worst survival rates in Europe. And where you live in Britain seems to affect your survival rate as well, either because of exposure to cancer-causing agents or because of different standards and availability of treatments throughout the country. Several cancer drugs are not available because they're considered too expensive. Britain spends less on its healthcare than any other country in Europe -- although I'm aware that money isn't the answer to everything. The US has one of the highest spendings on health for the number of people in the country -- and yet in many areas infant mortality is higher than in countries such as Bangladesh.

3. He got rid of hundreds of patients who were going to be gone soon anyway.

   It has been repeatedly said in discussions about embryo stem cell research over the past few years that the embryos, left over from IVF, are going to waste anyway, are going to be discarded anyway. The same argument was put forward, incidentally, about taking the organs from the dead children in the first example.

   The headline, however, refers to Dr Shipman, a general practitioner, the regular family doctor, who was jailed last year for the murder of 15 of his patients. A subsequent enquiry suggests that he may have killed over 300 people. If so, considered to be one the 'largest' serial killers of all time. It seems he gave lethal injections to elderly patients, mostly women, even though they weren't sick. Their old age is one of the reasons why it took so long for his actions to come to light. They could have died soon anyway.

4. We don't treat the living or the dead with respect.

   Comments like these were made when photos were splashed over the front pages of newspapers of corpses lying on the floor of a hospital chapel, not covered up so giving an image of having been tossed there, because the hospital mortuary was full. And because of stories about the hospitals in Britain being at crisis points: not enough beds, patients staying on trolleys in corridors for 24 hours - and this is commonplace and not because of 'flu epidemics and the like.

   As one commentator said recently, "It's not a good time to be a doctor in Britain at the moment". Credibility, belief and trust are at low points.

   The same is said of scientists. The BSE epidemic is said to have started this mistrust and disbelief in scientists, compounded by the introduction of GM foods over the past couple of years. Given your recent changes in health and agriculture ministers here in Germany, I don't think I need to go into how BSE has unexpected political ramifications.

Part II: Engineering Consent

I've described these examples of media headlines to illustrate that there IS public feeling about living and dying - and what you do with living and dead entities. It would be expected, therefore, that the general public would not easily accept creating human embryos via cloning so as to use them for replacement organs. Since this issue first came to public attention with Dolly the cloned sheep in 1997, I would argue that discussions and debates as they relate to humans have been clearly channelled in certain directions in terms of what is discussed, what is categorically not discussed, and the language used to do so with a view to gaining public acceptance, albeit tacit, for embryo cloning and stem cell research.

I've borrowed the phrase 'engineer consent' from the practice of corporate public relations, and it perhaps sounds too precise, too much of a conspiracy theory, that a group of people sat down one day round a table and mapped out their strategy. I don't believe it was quite like that, although I know that an immense amount of lobbying activity from the corporate and scientific establishment has gone on behind the scenes in the past few years.

But the description in the 1950s of an influential PR person in the US of engineering consent does seem to fit what has been attempted in Britain concerning further embryo research. He described it as "quite simply, the use of an engineering approach - that is, an action based only on thorough knowledge of the situation and the application of scientific principles and tried practices in the task of getting people to support ideas and programmes. Any person or organisation depends ultimately on public approval and is therefore faced with the problem of engineering the public's consent to a programme or goal".

I'll mention briefly a few examples of engineering of consent to embryo stem cell research, particularly of how things are spoken about and what is not said:

1. Language and definitions are one of the most obvious ways in which attempts are made to persuade people that there's nothing really wrong with playing around with embryos. The embryo has become 'a bundle of 100 cells no bigger than a pinhead'. It's amazing how often this description comes up. The MPs and journalists now use it all the time. As just cells, as one MP said, they're living, but they're not alive and they're not a life. I've heard comparisons made with skin cells and hair cells which fall off us every day. A cell is a cell is a cell - all equivalent.

   For instance, the liberal broadsheet newspaper, The Guardian, said as follows:

   "The question ... is whether scientists should be able to carry out experiments on a particular kind of human cell in the hope of treating serious degenerative illnesses such as Parkinson's and Alzheimer's.

   Given that there are trillions of cells in the human body, and we slough off millions of them every day as we shed dead skin, that does not seem so controversial."

2. A second careful choice of language has been an assiduous attempt to get away from cloning and all its connotations - so gradually over the past four years, journalists, parliamentarians and others have become adept at using phrases like 'stem cell research' or cell nuclear transfer or CNR. My favourite - only because I think someone somewhere must have thought long and hard for this and come up with a brainwave in the middle of the night - is regeneration. This is a new field of 'regenerative medicine'. What could be more positive and beneficial than this? This goes one step further than the appropriate of environmental language of recycling and waste recovery, which is also used.
3. What is left out of all the debates about cloning and embryo stem cell research? We are repeatedly told that people are suffering and dying of untreatable diseases - but as the cancer example earlier shows, just because a treatment is medically possible doesn't mean that those whose lives might be improved are going to get it, particularly as Britain has been gradually embarking these past few years on privatizing its public services, including health and welfare services. If this trend continues unabated - and there is a strong current from within the international trading system, the World Trade Organisation, to do so - those who will get these treatments will be those who can afford it. Britain has already substantially reduced its public support for those with long-term illnesses such as Parkinson's and Alzheimer's.

   It might be argued that this a political decision or an economic one - allocation of resources - which is unrelated to the science itself. But I would argue that the science is not taking place in a political or economic vacuum or neutral territory.

4. This fact is emphasised in another aspect which has been generally left out of the debate. That one of the major reasons why the British government wanted to change the law to allow embryonic stem cell research is because it wanted to stop its scientists going abroad, because it wanted to catch up with other countries, because it doesn't want other countries to overtake it, because it has pinned some of its hopes for future economic growth onto biotech.

   The countries Britain is in a race against are, of course, the United States, but also Germany. It may not be on the medical pages of the newspaper, but the business pages are worried. This is a quote from the business section of The Observer newspaper last November:

   "The US has led the biotech revolution for three decades but since the 1980s Britain has established its own niche as a powerhouse of innovation. Now, however, it is being outshone by Germany, which did not even have an industry to speak of five years ago. While Britain still has the biggest industry in Europe, its companies are undervalued by investors, while their German counterparts have reached sky-high US levels and have started taking over UK companies."

   The success of the Frankfurt Neuer Markt since it was founded in 1997 for biotech companies wanting to get access to finance has prompted British analysts to push for UK law to be changed - not the embryo research law but less ethically contentious legislation governing qualifications for the stock market. Sure enough, in January, the rules restricting the listing of biotech companies on the Stock Exchange were relaxed to 'make it easier for new companies to raise cash'.

   When it comes to matters of life and death, though, we don't like talking about the very grubby topic of money. Maybe in the US, it's perfectly accepted to acknowledge that health - or rather ill-health -- means money and profits, but in Britain, we still like to talk about altruism and relieving suffering. Another recent topic splashed across the newspaper front pages and television screens has been of a British topic who bought twin baby girls in the US to adopt them - they paid over £8,000 for them. Much outcry because they had paid for them, because they had done the deal over the Internet. What was considered 'repugnant' was 'the bidding for babies in a globalised trade' and the 'desperate, selfish behaviour' of the couple. It seems all right, however, to be desperate enough to pay for IVF, about £3,000 a course of treatment - that's not selfish, and couples are then encouraged to donate any so-called 'leftover' eggs or embryos to others or for research for free.

   Cartoon: also recent outcry because publicity about a woman 56 having IVF twins: thus cartoon encompassing three aspects of age of IVF, Internet, buying.

5. In all the debates and discussions about embryo stem cell research and personalised tissue replacements, just where these eggs are going to come from is rarely, if at all, mentioned. It's not a technical or safety scientific challenge that could be solved with more research. It's a practical consideration. Will women have to be paid more for egg donation? The legal amount is £15 at present. Free IVF if you donate half your eggs? Free hysterectomy in return for your eggs? Buy one, get one free? Two for the price of one?

These are just a few of the ways in which, in my opinion, over the past four years or so, attempts have been made to 'engineer consent' to cloning, genetic and reproductive technologies.

Part III: Did it work? Why did the parliamentarians vote as they did

Yes, the channelling of the debate did persuade some people to vote as they did.

But despite the best efforts of those in favour of further embryo research and cloning, many parliamentarians in both lower and upper houses, as I've said, still felt immense unease about the proposed change in legislation. Several have said that they can't recall getting as many letters from their electorate on the topic. Others said that in December, it was the topic for discussion in all the tea-rooms and bars. I met several MPs who, just the evening before, who said they didn't know how to vote. They said that the majority of occupied the middle ground between no research at all, and all research is fine. They called their decision 'agonising'.

Why did they then vote as they did? From talking with parliamentarians and others, the following have been mentioned, but I'm sure there are more:

1. Because you want to get elected next time around.
2. Because you don't know what to say to someone who is suffering or dying of Parkinson's or Alzheimer's, or whose relative is suffering?
3. Because, as a layperson, you don't know which scientist to believe, the one who says that embryo stem cells are the way of the future, or the one who says that adult stem cells have just as much, if not more, potential. Both argue convincingly.
4. Because you believe in regulation, that it works, that it is enforced and will be enforced, because you believe the government ministers who tell you that it is effective.
5. Because of hope, because of promises.
6. Because you're not religious, not a "loony Catholic", not anti-abortion.
7. Because someone somewhere is going to do embryo stem cell research and cloning anyway, so we might as well do it properly, transparently, safely.

1. Because you want to get elected next time around.

   It's a very practical example of why things get done or not done which have nothing to do with the issue at hand, eg. sanctity of life, suffering people or whatever.

2. Because you don't know what to say to someone who is suffering or dying of Parkinson's or Alzheimer's, or whose relative is suffering?

   This argument not only relies on death as an abnormality, but also on the individual taking precedence over others. The government minister Yvette Cooper urged parliamentarians to think of:

   "the woman who endures a dreadful stroke ... the child who falls from a horse or a bike and breaks his neck ... The issue is about a boy paralysed in an accident in a rugby match who will never walk again ... a woman with Parkinson's disease who struggles with speech, so that she cannot sing nursery rhymes to her children ... a grandfather who cannot enjoy his grandchildren growing up because of a devastating stroke. It is about patients waiting for heart or liver transplants that will never come. For all these family tragedies, stem cell research may provide them with hope". (Cooper, Hansard, 19 Dec 2000 col.213)

   If you don't allow this research, you are condemning these people to death. It is the only remaining hope. Neil Scolding, a researcher into adult stem cells, argues that voting against embryonic stem cell research is NOT to deny sufferers a cure because they are alternative research avenues.

   Some have argued that research can continue along both lines: adult stem cells and embryo stem cells. But Scolding said that, if the law was changed, he would expect money for research into adult cells to dry up.

3. Because, as a layperson, you don't know which scientist to believe, the one who says that embryo stem cells are the way of the future, or the one who says that adult stem cells have just as much, if not more, potential. Both argue convincingly.

   Who do you believe about adult stem cell or embryonic stem cell, about what any of these stem cells can do?

   As a layperson, a non-scientist, a non-medic, you end up opting for one side or the other for reasons other than the science. One parliamentarian said he opted for the one 'who explained things nicely'

   From a campaigning or political point of view, although I think it's worthwhile pointing out other research avenues (adult stem cells) and flaws in existing avenues (likelihood of tumours, use of 'old' DNA), also suggests that have to consider other areas as well.

4. Because you believe in regulation, that it works, that it is enforced and will be enforced, because you believe the government ministers who tell you that it is effective.

   Several aspects strike me about the belief in regulation, particularly Britain's regulation in this area, regarded by many as a model. 'The UK enjoys a leading international position in the resolution of these difficult questions', said one government report, (although I would query whether they get resolved)

   I know researchers in Germany have commented that they appreciate the British system because the information of what clinics are doing what is publicly available, whereas it's difficult to get that information in Germany - and in the US, no information at all in the private sector.

   First, is that what it supposedly doesn't allow, for instance, reproductive cloning, is what the bulk of researchers and companies have little interest in working on anyway. It's then easy not to allow something that no one's really interested in.

   A comparison can be made with property. No one really minds if you ring fence an area of the deep forest when no one wants to go there, or commit the fanciful idea of declaring some part of the atmosphere to be 'yours'. The sheep farmers in Scotland whose sheep were considered too contaminated to be eaten for several years after the 1986 explosion at Chernobyl know that the atmosphere doesn't respect national borders.

   But when oil is discovered in the jungle or when you need some part of the atmosphere so you can put all you carbon dioxide emissions in it (the current stage of the climate negotiations), then when the line has been drawn matters very much indeed.

   Drawing lines is in fact a common metaphor when talking about genetic research. 'Where do we draw the line?' is what people ask. But lines can be moved - as is clearly the case with the embryo research now compared with some 10 years ago in Britain when embryo research was first legalised. One of the members of the upper house, who was in favour of this research, unwittingly I think, described the process as 'drawing lines in the sand'. If one is concerned about this research, one has to take care about what lines are drawn on what basis and for what political purpose.

   Secondly, simply because something is regulated doesn't mean that the regulation will not be transgressed. What are the enforcement mechanisms? The police, if you like. What are the penalties? The HFEA, the government body whose responsibility this is, has experience in matters of reproduction, but what about disease? Does it have the expanded staff, let alone technical and scientific expertise?

   Government ministers and others repeatedly said that reproductive cloning would not happen because it's illegal. Repeatedly, the government minister Yvette Cooper in the lower house said:

   "Human reproductive cloning is illegal. It must stay illegal. Under these regulations [the change in the law], it will stay illegal. These regulations have nothing to do with human reproductive cloning. I know of no one ... who advocates human reproductive cloning." (Cooper, Hansard, 19 Dec. 2001, col 220)

   Incidentally, so-called reproductive cloning is not illegal, according to British law. It's just that the licensing authority, the HFEA, has said that it wouldn't give a licence to someone to do this.

   Comparing with some of the stories I started with this presentation with, it should be pointed out that killing people is illegal - but the doctor still did it. And, moreover, that they are regulations governing the practice of doctors which have been changed since this case came to light - but that experts believe they changed regulations still have sufficient loopholes in them for it to happen again.

   Thirdly, is that the general trend in Britain and elsewhere is towards DE-regulation. Companies in particular should be left to themselves and the market will regulate itself. A Financial Times journalist asked 'Who is regulating all the activity of the biotech companies?' The answer: 'Firstly, the financial markets'.

   Regulation which is considered a barrier to international trade in goods has gradually been dismantled under the auspices of agreements which make up the World Trade Organisation. Regulation which has public health or environmental goals is also being targeted - and not just for trade in goods, also for trade in services -- which includes all manner of health care services.

5. Because of hope, because of promises.

   Analyses of IVF have shown that 'hope' is one reason women go through these procedures time and time again, despite the discomfort and various costs involved and desperation. Similarities here. Promises of cures and treatments

6. Because you're not religious, not a "loony Catholic", not anti-abortion.

   To vote against a change in the law was felt by some to be a vote FOR aspects that they weren't comfortable with either.

   Where was the opposition that wasn't characterised as religious? How could those who felt uneasy about developments express their unease without being dumped into the 'right to life' grouping.

   With opposition characterised as religious, particularly Catholic, I don't think there was enough articulation, including by the range of groups that I work with, of clear, simple, concise arguments and messages that people and parliamentarians could hang on to - and not just of arguments. There wasn't a visible, organised, political presence.

7. Because someone somewhere is going to do embryo stem cell research and cloning anyway, so we might as well do it properly, transparently, safely.

   One MP did raise this issue.

   "The question is not about whether to continue down this route in the fight against degenerative disease, but whether we want to take the moral and ethical decisions that will foster that research here in the United Kingdom ... We are not talking about balancing the moral argument for research against the moral hazard of exploiting embryos, but about balancing the moral hazard of exploiting embryos ... against the risks to our biotechnology and pharmaceutical industry of not proceeding ... The question is ... whether we ... wish to sanction [such research] in order to promote our pharmaceutical and biotechnological research base."

   His comments, however, were not well received. Supporters of cloning and embryo stem cell research seemed uncomfortable with his analysis "It is not good enough", one of them said "to say that because our biotechnology industry needs to be supported we should allow it to do shady things".

   The discussion along these lines was quickly altered.

Part IV: What next for Britain and Germany

What next? One might thing that those who are, for various reasons, concerned about embryo stem cell research and cloning in Britain would have given up. The law has been changed, that's what the papers say.

1. In fact, not that simple. The upper house of parliament, the Lords, was in fact threatening to delay or throw out the legislation completely - another example of the opposition to the change in the law. Thus the government made a last minute concession that a House of Lords committee would look into the issue and that no licences for this research would be issued until this committee reports back in an expected 9 months' time - an appropriate length of time, perhaps. There is no legal requirement for the government to keep to this promise, especially if it's not even the same government, given that an election is expected in May this year. Thus giving evidence and arguments to this committee and organising around it is one avenue, particularly of those arguments which have been primarily left out of the debates.

   One might argue, however, as several of the Lords did that more information and more debate won't necessarily change people's opinions. There is an assumption in much of our political work that having more debate will bring about change and in the end consensus, we'll sort out our differences. 'The mark of a democratic community' writes one journalist 'is that conflicts of interest and views are acknowledged and resolved'. I disagree, they're not resolved - but that doesn't mean that decisions don't get made.

2. The need to link wider, to break down the compartments that seem to exist between public thinking and discussion about all these issues such that concerns raised by all the examples I started out with are also raised when.
3. The need to think more about what one is arguing for and not just what one is campaigning against - for disability rights or against indiscriminate prenatal testing? for accessible healthcare or against genetic engineering of humans.

   That need to take care not to get sucked into the 'divide-and-rule' strategy, for instance, dividing off 'reproductive' cloning from 'therapeutic' cloning, or in essence, from being primarily, if not only, concerned with the potential of genetically engineering humans and paying no attention to other aspects - such as prenatal genetic testing and prenatal genetic diagnosis - or indeed, of the whole infrastructure that supports it, such as IVF. Without IVF, there wouldn't be the embryos available for the research.

4. The need, as far as human genetics issues in general are concerned and embryos in particular not to get stuck solely on the ethics of it all. Ethics seems to be mentioned in these cases only; it's one of the few times when all sorts of groups and individuals will call upon religious bodies to pronounce. Such bodies get ignored, even ridiculed, the rest of the time in what is increasingly a secular society in Britain. Ethics and moral, in the case of embryos, have served to prevent discussion on other key aspects: politics and economics. The political economy of ethics.

   A quote from another Financial Times commentator, not about cloning or embryo research, but about the free market:

   "Markets are efficient vehicles for generating wealth, and in this sense are very much in the public interest. The trouble is that they also promote manipulative behaviour. They encourage us to treat other people as objects. And, by doing so, they render us less than fully human.

   Policymakers who favour market 'solutions' for almost every problem are thus sadly misguided. We need to retain spheres of life whose governing principles are ethical rather than economic."

   I would agree -- but despite all the talk of ethics in relation to embryo stem cell research, I would argue that economics rather than ethics were the governing principles in the recent UK decision.

5. The need to remind everyone about preventative health care, whether one is talking about pollutants, known triggers of Parkinson's and Alzheimer's -- long-term exposure to low levels of pesticide have recently been associated with Parkinson's -- or simply access for food and livelihoods, or too much access. Diabetes, for instance, is considered to be one of the world's worst and fastest-growing health epidemics, attributed not to diabetes genes but to the spread of 'the couch-potato lifestyle', and a Western diet. The fourth or fifth leading cause of death in most developed countries.

   And as one critic says, "we should point out that the cost of high tech interventions means failure to pursue other potentially beneficial clinical and socio-economic interventions"

   Public health has, ironically, become a radical demand.

   I realise that the British decision has added to pressure to change legislation in Germany. I hope that some of the experience of Britain, although it won't play out in the same way here, will be of use.

   There is a lot of work still to do, to break out of the framework of debate, not to remain trapped in the tramlines of what we talk about and how, not be caught between pro-life on one the hand - anti-abortion - nor pro-life on the other, meaning promised cures for sick people.

   Engineering of consent is not just about co-opting your opponents or buying up people. It is also about having the political power to exclude certain issues from debate, to mould arguments to suit your interests. It is as much about political organisation as about arguments.