Dolly the cloned sheep was an unexpected scientific triumph. In replicating an adult mammal for the first time in 1996,1 Dolly's creators at the Roslin Institute in Scotland overturned long-established assumptions about cell biology and cell differentiation (see Box 1).
But Dolly was a public relations disaster too. The public worldwide was shocked. The idea of evil megalomaniacs creating row upon row of identical copies of themselves seemed no longer the stuff of futuristic fiction but an imminent possibility. The public demanded to be reassured that the Dolly techniques would never be applied to humans.
Now many scientists and biotech companies became alarmed. Even if they themselves had no corporate interest in duplicating human beings, they feared that broad bans on the Dolly techniques could interfere with genetic and biological research more generally. Public concern about cloning, no matter how "misinformed", "emotional" or "uneducated", could undermine confidence in gene testing, gene therapies and a range of medicines and vaccines which use genetic technologies and knowledge -- products on which many biotech and pharmaceutical companies were, and still are, pinning their financial futures. For the industry to mishandle a "serious ethical issue, such as human cloning", warned Carl Feldbaum, President of the US Biotechnology Industry Association, would threaten the survival of emerging biotech companies.2
It was time for some serious PR damage limitation. Scientists, medics and industry representatives went before the public to emphasise the potential benefits of human cloning techniques in particular and medical biotech research in general. Assiduous attempts were launched to "educate" the public into a view of health as something which demands the therapies which the biotech industry is seeking to provide.
In the process, many social, economic and environmental aspects of health and disease slipped further into obscurity, as did questions of how the potential benefits of biotech would be obtained and distributed, and how they could alter significantly our perceptions of ourselves. In the past few years, it has become harder to raise key questions relating to the increased geneticisation of our lives and societies. Yet only by paying attention to such questions will it be possible to lay the groundwork not only for a thorough and responsible discussion of the issues raised by human cloning and genetic engineering, but also for more democratic decision-making about the ways in which our societies are organised.
A first step in allaying public fears has been to deny categorically that the techniques which yielded Dolly might be used to produce humans.3 Replicating human beings, insist governments, biotech companies, scientists and medical bodies, would be abhorrent.4
But they do not deny that the techniques might be applied to humans for other purposes. Far from it. Human cloning techniques, they explain, could be used for other "morally unobjectionable"5 or "beneficial" purposes: to produce organs or tissues to replace or rejuvenate failing and diseased parts of the body; to assist in cancer research; to develop products to slow or reverse ageing; to test new pharmaceuticals; to test embryos before implanting them in women's wombs during in-vitro fertilisation (IVF) (see Box 2). According to a British government-sponsored consultation, this "therapeutic cloning"6 should never be confused with "reproductive cloning" -- even if both involve research into how to replicate human embryos and how to engineer human beings genetically.7
This powerful and neat distinction between end uses has allowed legislators and scientific bodies to outlaw (in theory) the replication of human beings while at the same time countenancing the research that would make it possible. Once this research has accustomed the public to the idea of cloning for spare organs and the like -- the London Financial Times estimates a period of five years may be adequate8 -- moratoriums on human replication could be reviewed. By that time, it is assumed, the promise of, for example, curing "hundreds of thousands of sufferers of Parkinson's disease" with an "injection of nerve cells grown in a laboratory dish"9 would make the unbreakable links between medical or therapeutic cloning and the replication of humans seem unworthy of concern.
The medical benefits being claimed for cloning technology cannot be achieved, in other words, without also laying the basis for replication of human beings and for human genetic engineering. Yet these benefits themselves deserve a careful critical look. In particular, the following questions need to be raised:
- What causes the ill-health and disease which the potential applications of cloning technology might treat?
- Would we all benefit or just some individuals?
- What sort of assumptions about health, science, gender, race and society does the current fashion for promoting these technologies rely upon? What does it conceal?
- What commitments would society and scientific research have to make in order to obtain the potential benefits?
Discussion of issues such as these should be an integral part of the broad public debate that scientists, medical professionals, government and the biotech industry are calling for before they contemplate proceeding with human cloning.
One benefit being advertised for human cloning techniques (and indeed for genetic research more generally) is that they could help to cure, treat or slow the progression of many diseases for which at present nothing much can be done -- cancer, Parkinson's and Alzheimer's are often mentioned.
This claim rests on the assumption that these diseases are simply a matter of body cells not behaving as they should. Cancer, for instance, is seen predominantly as a condition in which cells multiply endlessly. Cloning human embryos, it is argued, could extend knowledge into how they do so with a view to finding treatments to stop them. Similarly, Parkinson's disease, a progressive brain disorder caused by the death of a certain class of brain cells, might be blocked, it is thought, by transplanting certain embryo cells into the cranium. Transplanting them into the pancreas of a diabetic, by the same token, could encourage production of insulin (see Box 2).
What is invariably left out of these descriptions is what causes cells to behave abnormally or to cease functioning in the first place. As US biology professor Sandra Steingraber, who became a cancer patient at the age of 20, points out:
"Cancer arises through a series of incremental changes to chromosomal DNA. Some of these DNA alterations can be inherited, but the vast majority are acquired during the lifetime of an individual when genes perfectly healthy at the time of conception become damaged."10
While molecular genetics has certainly provided much information about how cell behaviour and DNA alterations are implicated in cancer, "to say that 'DNA alteration is at the heart of cancer induction' ... confuses mechanism with cause", says molecular biologist Bonnie Spanier.11 "It does not necessarily follow", she concludes, "that genetic research is the best approach for understanding what causes cancer or how to prevent it":12
"A large majority of human cancers are influenced or promoted by environmental carcinogens in our workplaces, in air, water, and food, in such cultural habits as sunbathing and tobacco use, and in our social conditions such as poverty and stress."13
Many people with Parkinson's, likewise, have a history of exposure to pesticides, herbicides or industrial solvents.14 Yet, as organic dairy farmer Mark Purdey points out in the case of Parkinson's and other degenerative nervous disorders:15
"Researchers have tended to focus upon 'natural causes', such as viruses, genetic defects, stress, hysteria and naturally-occurring toxins as possible causes -- investigation of which soaks up the bulk of research funds -- while disregarding the large numbers of synthetic pollutants that have permeated food chains since the industrial revolution."16
Moreover, cells derived from cloned embryos (or from aborted fetuses) may replace dying nerve cells in the brain, but they are unlikely to stop whatever is killing them in the first place.
Similarly, the underlying cause of the worldwide increase in the incidence of diabetes -- the World Health Organisation (WHO) projects a more than twofold increase in incidence of the disease by 2025, with up to 300 million people being affected -- cannot be that people are suddenly sprouting "diabetes genes". If certain individuals are indeed genetically predisposed to the disease, something must be triggering its growing incidence.17
It may well be, as Harvard biologist Ruth Hubbard suggests, that it "is far easier and more convenient for scientists to pretend they will conquer cancer by studying the molecular transformations of genes and cells" than to press for a lowering of exposures to carcinogens and other pollutants.18 Nonetheless, it would surely be more rational and efficacious to improve individuals' and societal health and to alleviate suffering by pursuing this latter course than to clone human embryos for cancer molecular research or to undertake speculative programmes of genetic alteration. It is largely through obscuring the wider causes of these diseases that human embryo cloning techniques come to seem beneficial, plausible and reasonable.19
Just as a heightened focus on the cellular causes of disease ignores the economic, political and social forces that contribute to cell misbehaviour, so too the privileging of the role of genetic anomalies in causing disease involves downplaying the importance of the "environment" of the genes. Such anomalies may be inherited from one or other or both parents, present at birth, or acquired later in life. Again, this may obscure wider causes of ill-health -- in ways that favour cloning or genetic technologies and knowledge as "self-evident" solutions, but that in reality fail to address the underlying reasons for the condition. Indeed, as Spanier comments:
"Only if the gene is the sole determinant of life does it become possible to look to genetics alone for solutions to problems such as illness ... and human imperfections ... On the other hand, if the determinants of what constitutes and directs life are presented as a balance among metabolism, energy conversion and reproduction, in dynamic interaction over time with the environment in which life occurs and of which it is a part, then the search for solutions becomes similarly multifocal, stressing the environmental context as much as the internal environment."20
For example, the inference that genetic testing of cloned embryos in IVF procedures (see Box 2) -- and indeed of prenatal testing in general or of embryonic/fetal genetic engineering in future -- will lead to a healthy infant seems plausible only if the role of a number of environments is ignored, that of the gene, the egg and the mother, for instance, and if infant health is considered during pregnancy but not afterwards.
Genes are often presented as "objects" -- a particular sequence of DNA bases which codes for a protein -- which "determine" biological outcomes. Traditional genetic understanding holds that a gene is a distinct and independent unit which can be isolated from the rest of the DNA and moved elsewhere while still carrying out its function.
But rather than being physically-bordered control mechanisms, genes are more part of complex dynamic interdependent processes between all the small and large molecules and ions in a cell, which are in turn affected by interactions with adjacent cells.21 Moreover, a gene may behave differently depending on its location on the chromosome and the presence or absence of other genes. There are few genes that result in a specific genetic condition irrespective of their environment.22
Moreover, while in line with more general social practices and commitments to "centralized control, to hierarchical organisation, to difference as dominant-and-subordinate",23 this way of according special "ruling" privileges to nuclear DNA or genes is scientifically incorrect.
In most depictions of embryo cloning, the contribution of the egg "shell" or cytoplasm into which a cell nucleus derived from another embryonic, fetal or adult organism is placed (see Box 1), is downplayed. The nucleus does not, in fact, provide all the DNA of the resulting organism (if the cloning technique is successful and if the constructed embryo develops to full term). And genes or DNA don't grow embryos all by themselves.
The egg cytoplasm provides mitochondrial DNA -- packages of DNA inside a cell that are entirely separate from the chromosomes in the nucleus.24 This mitochondrial DNA is now believed to be implicated in some diseases and some body processes, such as ageing, one of the proposed targets of research into human embryo cloning.25
Other components of the egg's cytoplasm also become part of the resulting embryo and play a major role in directing its development. Indeed, the first 8-16 cell divisions in a human embryo are believed by some scientists to be "orchestrated" not by the nucleus, but by the egg cytoplasm.26
Furthermore, the egg cytoplasm is believed to play a critical role in returning differentiated adult cells (skin, blood, bone cells, for instance) to the undifferentiated embryonic state (in which they have the potential to become any type of body cell), a process without which recent scientific breakthroughs in cloning would have been impossible.
While a variety of prenatal gene tests are already offered to prospective mothers in some countries, less attention is typically paid to ensuring that they have adequate nutrition, housing and income and a domestic life free from stress, violence and abuse before, during and after pregnancy.27 Nor is much attention usually paid to the variety of toxins which may exist in their workplaces, homes or neighbourhoods -- aside from those in cigarette smoke or alcoholic drinks to which responsibility for exposure can be assigned to pregnant women.
Yet these environments can be at least as critical as an embryo's nuclear DNA endowment to an infant's immediate and lifetime health. For instance, some reports suggest that babies of women living near toxic waste dumps have a one-third higher risk of birth defects.28
An emphasis on genes and good maternal behaviour obscures the fact that infant health is only partly a matter of what happens before birth. No matter how many prenatal genetic tests are undertaken, a healthy baby is not guaranteed because the tests are not foolproof and because other events may happen.29 Most disabled people become disabled because of what happens to them after birth, not because of genetic conditions. In Britain today, car accidents are the main cause of death in children.31
Conversely, finding a genetic predisposition in an embryo to a disease or condition does not mean the child will develop the disease in later life.
Explanations of ill-health that ignore these wider "environments" almost invariably lead to reductionist -- and misleading -- accounts of disease causation. Any farmer knows that the health of the soil is at the root of successful farming. A plant with genes to grow tall will be short if it receives inadequate sunlight, water or nutrients. By analaogy, as the Harvard Working Group on New and Resurgent Diseases stress:
"disease cannot be understood (let alone countered) in isolation from the social, ecological, epidemiological and evolutionary context in which it emerges and spreads. Indeed, if one lesson has emerged from the spectacular failure of Western medicine to 'eradicate' certain diseases, it is that diseases cannot be reduced to a single cause nor explained within the prevailing linear scientific method: complexity is their hallmark. Indeed, such is the network of factors that lead to disease that the conventional classification of diseases into 'infectious', 'environmental', 'psychosomatic', 'autoimmune', 'genetic' and 'degenerative' is probably applicable only to a few diseases where one factor overwhelms all others."32
Just as the wider environmental causes of ill health, disease and disability tend to be obscured by a genetic focus, so too are social influences. Yet these are often the most powerful determinants of health. Inferences that the applications of human cloning and genetic engineering are critical to improving our health ignore these findings.
Poorer people in developed countries, for instance, have annual death rates anywhere between twice and four times as high as richer people in the same society.33 A health study in New York's Harlem found that, at most ages, death rates were higher than in rural Bangladesh. In Brazil, infant mortality rates varied between different areas of the same city from 12 per 1,000 live births to 90 per 1,000 live births.34
Such health inequalities, according to British sociologist Richard Wilkinson, cannot be attributed solely to differences in medical care or different genetic susceptibilities between social classes, and are only partly explained by individual health-related behaviour (smoking tobacco, drinking alcohol, taking narcotic drugs, lack of exercise, poor diet). They are due, rather, to the "effects of the different social and economic circumstances in which people live"35 -- including unemployment, poverty, bad housing and environmental pollution. "Much more important than the small differences medicine can make in survival from cancers and heart disease are differences in the incidence of these diseases."36
All the broad categories of causes of death in developed countries -- heart disease, respiratory illness and cancer (some of the main targets of biotech research) -- are related to income distribution, argues Wilkinson. He concludes:
"To feel depressed, cheated, bitter, desperate, vulnerable, frightened, angry, worried about debts or job and housing insecurity; to feel devalued, useless, helpless, uncared for, hopeless, isolated, anxious and a failure ... It is the chronic stress arising from these feelings which does the damage."37
Wilkinson found that the healthiest societies were not the richest, but those that had the smallest income differences between rich and poor. Inequality and relative poverty have absolute effects: they increase death rates.38
The extensive research indicating the negative impacts on human health of unemployment, poverty, poor housing, stress and environmental pollution tends not to be reported publicly. Claims that human cloning techniques can help find answers to cancer, the diseases of old age and so forth continue to be credible in part because of this silence.
"Opponents of human cloning (as I am) cannot afford to ignore the benefits that such cloning might provide for all humankind."
David Tracy, Divinity SchoolUniversity of Chicago39
Suppose, however, that human embryo cloning did yield some of its speculative benefits, such as replacement organs or new cancer drugs or medicines to slow the onset of old age or embryonic tests and treatments for some genetic diseases. Would they not benefit everyone, not only in the industrialised North but also in the developing countries of the South? Would they not make it worth putting aside any qualms about the use of embryos or worries that they would be paving the way for the replication of humans and for human genetic engineering?
It is unlikely that the benefits, if realised, would be available "for all humankind" because health services, whether public ones provided by the state or private ones financed by private insurance schemes, do not have limitless funds. Decisions about what is provided and to whom and on what basis have to be made against a backdrop of older people comprising a larger proportion of the population in the West, heightened expectations of medicine, and a growing number of new, expensive treatments.40
The British government recently decided to restrict the availability on the National Health Service (NHS) of Viagra, a new drug which temporarily overcomes male impotence, to men with major illnesses or those made impotent by medical or surgical treatments -- an estimated one in five of impotent men in Britain. Viagra's manufacturer, the US pharmaceutical company Pfizer, estimates that the NHS bill would be £50 million if it was available to all impotent men who wanted it -- three times more than the NHS spends on impotence at present.
Given that the NHS has only a certain amount of money with which to buy drugs, should it go on those for which there is "medical need" or those "lifestyle" treatments which could lead to a medical improvement in quality of life?41
Cost-benefit decisions entail making value judgements over who should get what treatment. Already, in the US and the UK, the elderly and the terminally ill -- groups who are claimed to be in line for huge benefits from cloning research -- are in fact often the first targets of rationing.42 The way the availability of Viagra has been restricted suggests that any anti-ageing drugs coming out of genetic research would probably be rationed as well.43
In the US in the early 1970s, a committee of lay people from Seattle was asked by the medical community to formulate rules governing access to scarce kidney dialysis machines. The committee concluded that priority should be given to:
"breadwinners, family men who were fine upstanding members of the community. People who did not have a job, those who seemed unstable or who lived on the margins of society, were denied the life-saving treatment. Men were favoured over women, married over single."44
Given such trends in assigning priorities to products and people in a context of limited resources, there is no evidence to suggest that the fruits of cloning research would be distributed any differently. In fact, disputes over how to contain costs will only be exacerbated with the advent of cloning and genetic technologies.
By contrast, if a political decision has been made to limit public health care and welfare resources, some technologies and products which could save costs by reducing demand on public services will not be rationed, but rather promoted vigorously. Prenatal testing is a case in point.
US researchers believe that the steep decline in the number of infants born with Down's syndrome over the past three decades as a result of amniocentesis and ultrasound -- more than 90 per cent of Down's syndrome pregnancies detected by amniocentesis are terminated -- "will have a significant impact on the medical services used by infants with Down's syndrome".45 The British National Health Service is now planning to extend prenatal testing for Down's syndrome, currently offered to women over the age of 35, to all pregnant women, in order to save "the costs of maintaining people with Down's".46
With the advent of genetic testing of embryos, these policies could well be extended, as "defective" embryos are not implanted and a growing range of "defective" fetuses are aborted in order to avoid producing children "we claim we can no longer afford to raise".47
At the other end of the human lifespan, efforts are being made to prevent "expensive and debilitating aging diseases" through, for instance, human embryo cloning and genetic technologies in order to capture "direct and substantial savings to the economy".48 Some commentators fret that, if successful, "the extraordinarily long-lived elderly [would] become an overwhelming social problem".49 Yet those elderly people not deemed worthy of the treatments or unable to pay for them may well feel pressured to die. It is not surprising that debates about physician-assisted suicide or euthanasia have become more topical in Britain and the US.
Thus in societies which limit their health care and welfare resources, the benefits of human embryo cloning and of genetic technologies are not likely to be available to all.
"It makes as much sense to talk about the 'potential benefit to humanity' of a medical breakthrough without specifically considering access to that benefit as it does to discuss the quality of health care without addressing access to that care."
Lori Knowles, Associate for Law and Bioethics, The Hastings Center, New York50
The increasing privatisation and marketisation of health care around the world is likely to make treatments harder to get for many people, raising still further questions over exactly who among humanity will benefit from the new cloning and genetic technologies.51 If cloning research gets priority over efforts to improve distribution, this trend is likely to be entrenched still further.
Even in publicly-financed health care systems such as Britain's National Health Service, which has not been formally sold off, free market thinking has crept in through the back door -- and with it the likelihood that access to certain kinds of medical treatment (including many of the new genetic technologies) will increasingly be determined by "ability to pay". The latest set of NHS reforms introduced in April 1999 established partnerships between hospitals and health authorities; in addition, for the first time, the NHS will have to operate within a fixed annual sum, regardless of sudden demands like 'flu epidemics or the arrival of a costly new drug. Comments one Financial Times journalist:
"No one has mentioned privatisation in the context of this set of reforms. But if a government ever wanted to move to an insurance-based model for the NHS -- whether social insurance or private insurance -- [these reforms] would make it far easier to do so".52
Under the government's Private Finance Initiative (PFI), meanwhile, private companies will finance, build and operate public infrastructure such as new hospitals. The NHS is to pay the companies some 8-10 per cent of the annual revenue a PFI hospital receives from selling its services. At the end of the 25-40 year contract, the companies, not the NHS, are to own the hospital.53 As capital costs have risen, NHS trusts and health authorities have had to make savings on other budgets -- such as clinical services to patients -- to pay for them.54 An increasingly competitive and profit-driven environment will have "an enormous effect on the way limited health care resources are allocated -- who is cared for and what kind of care they receive."55
As health and health care are increasingly privatised, patients become consumers. The British Institute for Economic Affairs suggests that screening of healthy people for breast cancer, cervical cancer and high blood pressure, for instance, should be made available only to those willing to pay for them. Advertising directly to consumers, it is claimed, will ensure "equal access" to the tests.56
The products of cloning and related genetic research are also unlikely to "benefit all humankind" for the simple reason that they are directed mainly towards diseases and conditions whose treatments are expected to yield large enough profits, not necessarily those diseases and conditions which are the best candidates for the new approaches.
Thus the major targets for human genetic and cloning research are not so much rare genetic diseases as the diseases of industrialised countries and the diseases of old age -- in particular, cancer, heart disease, obesity and nervous disorders (including depression and neurodegenerative diseases, such as Alzheimer's and Parkinson's).57 As a representative of French pharmaceutical company Sanofi said at an industry conference on patent protection for the pharmaceutical and biotech industries, "here are the diseases which are big markets and for which there are no cures -- and which we all want to go for."58 Other illnesses are likely to "remain unexplored and untreated", no matter what the scientific promise of doing so, "because the market or the patients -- the clients -- are not economically interesting."59
Likely to be left out of biotech firms' purported rush to "benefit all humanity" are diseases whose patients (or whose insurance schemes or public health services) cannot pay for treatment. Anyone setting the research agenda for a biotech company will find their eyes constantly drawn toward the North American market, which accounts for 40 per cent of the estimated annual $300 billion prescription drugs industry and 60 per cent of drug company profits.60 North America, Japan and Europe combined account for over 80 per cent of pharmaceutical drug consumption, Africa for less than two per cent.
Good commercial sense can also steer companies disproportionately towards products for which a demand can easily be created.61 Genetically-engineered human growth hormone is one lucrative prospect: an average annual prescription costs $20,000. It has been approved for use in the US for children who have "insufficient" naturally-occurring hormone. One of the world's top biotech firms, the US company Genentech, agreed in April 1999 to pay a $50 million fine for having promoted the drug illegally over nine years to children who did not have a hormone deficiency but simply were not as tall as their peers. A 1996 survey by the Journal of the American Medical Association estimated that 40 per cent of patients were receiving the drug for non-approved uses.62
Some researchers have proposed that this hormone could also be used to slow the ageing process -- despite the fact that long-term use might elicit diabetes, arthritis, high blood pressure and congestive heart failure. As Ruth Hubbard suggests, the creation of demand for such products and the fact that the hormone can be produced, via genetic engineering, in industrial quantities helps turn the "normal process of aging into a disease".63
The best candidates of all for mass marketing are tests for "genetic disease" that could be used on large numbers of healthy people, followed by drugs aimed at "preventing" or treating these conditions. As Hubbard remarks:
"Pharmaceutical companies and physicians stand to make a good deal of money from inventing new diseases as fast as new diagnostic tools are developed that can spot or predict their occurrence."64
Every deviation from an invented "genetically standard human" has the potential to be labelled a correctible abnormality, ensuring that biotech and pharmaceutical companies need never run out of customers:
"If an atmosphere can be generated in which none of us feels safe until we have assessed the likelihood that we or our children will develop sundry diseases and disabilities, we will be willing to support this new industry in the style to which it would like to become accustomed".65
One side effect will be "to transform every healthy individual into a potential patient"66 or consumer for the saviour technologies of human embryo cloning and genetic engineering.
The claim that research into human embryo cloning might result in a flood of new cures also ignores the commercial imperatives that drive corporations toward providing long-term treatments rather than cures. A Financial Times guide to new medicines asked whether the pharmaceutical industry was directing its research efforts in the best way to benefit human health. Its conclusion was an unequivocal "no":
"Obviously each company is trying to develop drugs that will produce the highest commercial returns. And under present pricing systems, the return is likely to be lower for a quick cure than for a long-term maintenance therapy that keeps symptoms under control without solving the underlying problem."67
For instance, a 1998 survey by the Pharmaceutical Research and Manufacturers of America (PhRMA) found that of the 350 new biotechnology medicines in development, 151 were for cancer or related conditions.68 Researchers acknowledge that many of these treatments may slow the progression of a cancer, but will not halt it altogether or cure it. Concludes US health activist Judith Brady, "regardless of any individual oncologist's dedication, in a health care-for-profit system, cancer is the goose that lays the golden egg".69
Altruistic-sounding claims that embryo cloning could treat currently untreatable, potentially fatal diseases, meanwhile, ignore the awkward economic fact that the profits of large pharmaceutical companies have come in recent years mainly from sales of a few "blockbuster" prescription drugs -- those which earn more than $1 billion a year. The patents on a record number of these drugs expire in the next few years -- and firms have little in the pipeline to replace them. Once a 20-year patent runs out and any company can legally manufacture the drug, sales usually drop by 90 per cent. Merck is expected to lose $3.5 billion of sales by the year 2002 as its top-selling products go off patent; Eli Lilly, meanwhile, will face generic competition to Prozac, its highly-lucrative anti-depressant.70 Many of these companies are hoping products derived from genetic research will "treat" this problem, even if few marketable products have so far been found.71
These hard commercial realities do not sit comfortably with researchers' belief that their work will have genuine medical benefits. As Lori Knowles concludes of the "concern for global justice" displayed by Geron, the US company which financed and patented the research into the isolation of human embryo stem cells:
"We know that Geron wants to reduce human suffering, but it also needs to respond to the pressures of the market and has an obligation to give its shareholders the best return on their investment. Let's be candid. We should simply admit that access to medical resources, decent public health, and global justice cannot be easily attained if medical research is committed to private property and profit making."72
It might be argued that public financing of genetic research could ensure that economically uninteresting illnesses were explored; that research results were made publicly available rather than being privately patented; and that any gene patents which followed belonged to the state to be used for public health rather than private gain.
Current trends in public financing, however, do not suggest that this is a route which would ensure that the benefits of the new genetic medicine are distributed more equitably. In practice, much public money subsidises private companies, while public research has itself become reliant on private funding, or has been handed over exclusively to private companies. Public or state regulation, meanwhile, has been heavily influenced by commercial interests.
Public subsidies for private biotech companies tend to be aimed at boosting national economies rather than benefiting public health. The British government's rationale for wanting to keep the UK at the leading edge of medical genetic research, for instance, is to energise a flagging economy -- although the jobs biotech provides are few in number compared to the number of people out of work and require a high level of educational achievement, while profits get shunted largely to institutional shareholders. British Prime Minister Tony Blair's main response to calls for a moratorium on genetically engineered crops and foods due to uncertainty about the effects on environmental, animal and human health (including cancer and birth defects) was that "we are not going to destroy an entire industry".73
Thus the Department of Trade and Industry has given nearly £3 million a year to cloning research (even as a government-sponsored consultation into human cloning was underway during 1998) so as "to keep Britain ahead in this controversial field".74 The Roslin Institute has received at least £7.4 million of public money for its cloning research75 from the Department of Trade and Industry, the Ministry of Agriculture, Fisheries and Food, and the European Union. Among other corporate welfare measures, British biotech firms have been able to obtain 100 per cent write-offs against tax on research and development-related revenue and capital expenditure. So far, the financial benefits have accrued mainly to the few scientists-cum-entrepreneurs involved who have been able to patent their work and list their companies on stock exchanges.
Private pharmaceutical research is highly dependent on public money. As Thomas Caskey, president of the research institute of Merck, a top pharmaceutical company, notes of drug research:
"About 95 per cent of the fundamental discoveries that point you in the right direction come out of basic science funded by government and not-for-profit sources."76
Commercial imperatives affect not only biotech and pharmaceutical companies' own in-house research programmes, but also the agenda of the numerous public medical research institutions which have become dependent on industry funding.77 As science journalist Steve Connor points out:
"Many eminently trustworthy scientists from university and government laboratories now have to look for industry funding to carry out their work, making it more difficult for them to be seen to be free of vested interests."78
The results of public research may well be handed over to private companies to profit from by manufacturing and selling products derived from the research. In the US, for instance, the governmental National Institutes of Health developed Taxol, a drug used to treat breast and ovarian cancer, and paid for all the clinical trials. It gave exclusive production and manufacturing rights, however, to Bristol-Myers Squibb (BMS) for zero royalties. BMS went on to charge cancer patients in the US $10,000 for an annual course of the drug, in spite of the fact that it costs only $500 to manufacture, putting the treatment out of reach of many sufferers. When challenged about this arrangement, which yields BMS US$1 billion a year in subsidised sales, the US government has argued that what benefits BMS benefits the US economy.79
Nor has the use of public research money helped poorer patients outside the US obtain the drug. The US put South Africa on its "watch list" for bilateral trade retaliation after South Africa decided in 1998 to authorise national companies to manufacture generic versions of Taxol.80
State regulation may not necessarily act as a check on this public/private, commercial/scientific nexus.81 For instance, of the four members of the human cloning working group requested by the British government to investigate whether the country should change its legislation, none represented concerned citizens' groups. The biotech and pharmaceutical industry, however, was represented through George Poste, the "chief science and technology officer" for SmithKline Beecham.
SmithKline Beecham is considered to have led the whole pharmaceutical industry into genomics (the study of how genes are implicated in disease), "probably has more genetic information than any other company in the world",82 and is active in building up resources in bioinformatics (the use of information technology to make sense of the vast volumes of genetic and biological data pouring out of research laboratories).83 The company has given financial support to groups of patients with genetically-linked diseases. Perhaps unsurpris--ingly, George Poste is lobbying hard for Britain's National Health Service to switch to a health care system based on genetic testing.84
To claim in the face of such facts that public regulation and funding of genetic research would ensure equitable access to the products of cloning and genetic research is to fail to take account of the "formal and informal economic institutions wherein reside the real brokers of genetic research benefits".85
Given the economic imperatives driving cloning and genetic research and underpinning health care more generally, it is not surprising that the human body has become a "resource to be 'mined', 'harvested', patented and traded commercially for profit as well as scientific and therapeutic advances."86
Even in the early days of mammal cloning research in the 1970s and 1980s at the University of Wisconsin -- much of it supported by W.R. Grace (now owned by US agrichemical company Monsanto) -- it was the "economic promise of cloning" to multiply embryos from prized cattle costing $500 to $1,500 apiece which provided the impetus:87
"Companies saw gold ... Scientists would take precious cattle embryos, divide them into their constituent sixteen or so cells, and slide the nucleus from each of those cells into an enucleated egg. The result would be sixteen embryos."88
Similarly, the main aim of the Roslin Institute, which produced Dolly, and PPL Therapeutics, the company formed to raise funds and commercialise research at Roslin, is to produce pharmaceutical drugs in the milk of animals more cheaply than drugs that can be produced by existing methods. The vision is to create "flocks and herds of living medicine factories"89 or "bioreactors", as Roslin calls them. Ronald James, a director of PPL and a former venture capital portfolio manager, had the idea in the early 1990s that there were "riches to be made by any company that could figure out cheap, reliable ways to make valuable protein drugs ... that cost hundreds of pounds per dose",90 not least because "genetically-engineered animals can be used to make products on a scale no chemical factory could achieve".91
The Roslin group is also trying to engineer cows with human genes to produce what the group claims is human-like milk. Acknowledging that human milk is "superior for human infant nutrition", Roslin's patent application on this technology nevertheless argues that:
"Many mothers find breast feeding difficult or inconvenient. Moreover, in countries where infant food supplements are in great demand, it would be highly desirable to be able to supply a milk product with the nutritional benefits of human milk."92
Roslin seems unaware of the strict code adopted by the World Health Assembly in 1981 governing the marketing of breastmilk substitutes; the code aims to prevent companies from promoting bottle feeding and from suggesting that such feeding is equivalent to breastfeeding -- artificial feeding results in over 1.5 million infant deaths every year.
While the milk from Roslin's genetically engineered cows should contain the major whey protein found in human milk, it would be difficult, if not impossible, to engineer genetically many of the anti-viral, anti-parasitic and anti-infective properties of human breastmilk (which protect an infant from many diseases until its own immune system is developed) or all of its nutritional components, not least because these aspects are not yet fully understood. A mother's milk is tailor-made for her baby -- in contrast to any genetically engineered version -- and "delivered" in a uniquely safe way.
Yet as Patti Rundall, Policy Director of Baby Milk Action, an organisation which aims to end the avoidable suffering caused by inappropriate infant feeding, points out:
"The baby milk market is highly profitable -- it is currently worth about $7 billion a year. If the public can be convinced, either through genetic engineering or clever marketing, that artificial milks come closer to, or even match, the 'gold standard' of breastmilk, the potential for increased profit inevitably increases."93
Roslin's commercial arm, PPL, is also one of several companies racing to produce a pig engineered with human genes to provide spare parts for organ transplantation to humans -- an estimated potential market of $6 billion.94 Comments Ron James, "kidneys are where the really big market is."95
The tie-up between the US Geron Corporation and Roslin Bio-Med96 (under which Roslin Bio-Med becomes a wholly-owned UK subsidiary of Geron) will combine three patented technologies -- nuclear transfer or cloning; replication of human embryo stem cells; and replication of the enzyme telomerase (which is critical for cell replication and the life-span of a cell) -- to try to generate human cells and tissues that can be used to repair organs damaged by degenerative diseases, such as diabetes, Parkinson's, cancer and heart disease, without the threat of rejection from the patient's immune system (see Box, p.4).97 Geron's R&D vice-president believes that the firm has cornered the market on organ repair -- "we have it locked up", he said. The company hopes to create other products as well which can generate an earlier financial return: laboratory cultures of heart, skin or blood cells (derived from embryonic stem cells) on which to test new pharmaceuticals; and genetically engineered cloned animals to provide human blood products and organs for transplantation.98
Meanwhile, scientists at the University of Hawaii, by producing tens of cloned adult mice using a "relatively efficient" version of the Dolly technique,99 have opened up "the possibility of creating made-to-measure mice on a commercial scale"100 -- ideal for testing pharmaceutical drugs. Comments Financial Times journalist David Pilling:
"It is a little like Henry Ford and the car; he did not invent the car; he worked out how to mass produce it -- and this was what made all the difference."101
An economics-driven impatience with nature reveals itself in dismissive descriptions of "natural" human reproduction, which is labelled "remarkably inefficient"102 because of the millions of eggs and sperms that "go to waste." "Most embryos die before a woman is even aware she is pregnant", goes another lament.103 A female human fetus is described as having a "stockpile" of some seven million eggs in its ovaries, although the average woman releases only 400 eggs in her lifetime, most of which go "unused".
It is only a short step from thinking in such language to being able to say that aborted fetuses will only "go to waste" if their brain cells are not transplanted into people with Parkinson's or their ovaries mined for immature eggs. A Financial Times editorial notes breezily that "no real ethical dilemma exists" over the use of human embryonic stem cells as "they come from embryos that would otherwise be thrown away" or are simply a "by-product" of in-vitro fertilisation or come from "foetuses that are already aborted".104
The speculative applications of human embryo cloning are more easily made to seem "beneficial" when the environmental, social, economic and political causes of ill-health and disease are obscured, and when the "benefits" are presented in an abstract way which hides issues of access and commercialisation. Yet these purported benefits also receive support from more general contemporary attitudes towards health, death, life and children.
In the last few months, consumer advocates have observed with some consternation that it is now difficult, if not impossible, for people in Western countries to avoid eating genetically-engineered (GE) foods. GE ingredients are used in the majority of processed foods, while non-GE crops, including organic ones, are highly likely to be pollinated by GE plants from neighbouring fields. Whether to eat GE foods or not is hardly, at present, a permitted "consumer choice".
It is sometimes argued that these concerns do not apply to genetic medicine. Patients/consumers, it is said, do have a choice about whether to avail themselves of germ-line therapy or organs grown in genetically-engineered pigs.105 Yet closer examination of current medical realities reveals that it may be more difficult to avoid such "choices" and their consequences than might first appear.
Take, for example, prenatal screening, which is often presented in impeccable feminist language as something which "enhances women's choice". After all, no one forces pregnant women to screen their fetuses, nor, if the test indicates the presence of a certain gene or chromosome abnormality, to undergo an abortion.
Yet the "context in which testing and termination decisions are taken" is one full of social pressure and lacking in "balanced information for pregnant women". As British sociologist Tom Shakespeare notes:
"30 per cent of obstetricians would not give a woman a test for Down's if she did not agree to have a termination after a positive diagnosis. Only 32 per cent of obstetricians reported counselling pregnant women non-directively."106
A woman's agreeing to the genetic testing of her unborn baby -- or agreeing to abort it as a result -- may thus be less an expression of choice than an instance of conformity, a response to coercion, or even a co-opting of her needs to fit established biomedical goals.107
If a woman chooses to continue her pregnancy after her fetus has been diagnosed (in theory reliably and accurately) as having certain "unwanted" genes or anomalies, moreover, it becomes easier to maintain that it is her individual responsibility, and possibly that of her immediate family, to raise and look after the child without expecting any welfare support from the state or society. Several decades ago, some commentators were already arguing that carrying to term a fetus believed to be "genetically defective" could be considered fetal abuse. A 1995 study in three European countries showed that prenatal screening is the single most important factor influencing both laypeoples' and health professionals' attribution of blame for the birth of a child with Down's syndrome.
As anthropologist Gail Landsman concludes, simply the availability of a prenatal test for Down's syndrome (which is assumed to be accurate) enables blame to be placed on mothers for their children. The 1995 study itself, moreover, "contains an implicit assumption that the birth of a child with a disability requires assignment of blame".108 In July 1999, this assumption was made explicit when Bob Edwards, the British embryologist who helped pioneer in-vitro fertilisation, informed his colleagues that it would soon be a "sin" for parents to give birth to disabled children. "We are entering a world where we have to consider the quality of our children."109
In societies which already provide little practical assistance to parents in caring for and raising disabled infants, and in which mothers have become almost solely responsible for childcare and family health, the pressures on women not to regard giving birth to a genetically-"suspect" infant as a real choice may be even greater. In a public health system with limited resources, women may be pressured to have an abortion -- as many professionals now admit, there is no such thing as non-directive counselling. Under an insurance-based health care system, meanwhile, insurance companies may well demand pre-embryo implantation and prenatal tests and refuse to give insurance for infants with certain genetic traits.110
As more and more genes are identified, women will have more and more types of "disabilities" to divide into acceptable and unacceptable, normal and abnormal.111 They will come under increasing social pressure to bring their "choices" about whether to terminate their pregnancies or not into line with what their dominant society currently regards as normal or defective.
If prenatal diagnosis has led women increasingly to experience pregnancy as a "tentative" condition, to be committed to only when the genetic all-clear is sounded, so the genetic testing of "test-tube" embryos before they are implanted in a woman's uterus, or the genetic engineering of "defective" pre-implantation embryos via cloning technologies, may well lead to embryos having to pass more and more quality control tests before being allowed out of the laboratory. Either way, the result is likely to be what has been called "consumer eugenics" or "a subtly creeping, democratically soft eugenics"112 or the privatisation of eugenics.113
The more that any disability or even "abnormality" becomes categorisable as an avoidable misfortune, the more severe is likely to become the stigma and lack of social support and equal treatment which many disabled people already experience in society as their major disability.114 Small wonder that some disabled people see prenatal screening as "yet another form of social abuse" which "reinforces the general public's stereotyped attitudes about people with disabilities" and is bound to result in increased "job discrimination, barriers to obtaining health insurance coverage, cut-backs on public support programs, and other similar negative actions".115 "We know the real territory which genetics assumes as its own", says Bill Albert of the British Council of Disabled People -- "the quality of our lives":116
"I would say to people who say that genetics is about removing illness and suffering from the world that I am somebody who they might think of as ill. The only way they could remove my illness from the world is by removing me. And at the moment, that's the only way they can remove most things, most so-called disabling conditions. I don't want to be removed from the world, I don't want my fellow disabled people to be removed from the world, and that's the basic argument. Because there is no therapy except screening, and screening is about eliminating people."117
Reinforcing the idea that disabled people are "defective human beings"118 for whose "defects" individuals are responsible can only make attempts to reduce welfare benefits to disabled people seem more reasonable. Nor can it be argued that this does not matter since science will have long since abolished disabilities: the vast majority of the disabled, after all, are not born with their impairment but acquire it through accident or illness.119
It may be argued that such worrisome social consequences need not follow on from other human cloning technologies, such as those which produce genetically-engineered embryos, replacement organs or new drugs. Yet these technologies also presuppose and reinforce far-reaching political and cultural changes.
Each implanted egg, for instance, presupposes a complicated and largely hidden social infrastructure for extracting industrial quantities of "surplus" ova from aborted female fetuses or from women undergoing fertility treatments (see Box 4). This system may not only put pressure on women to have later abortions so as to obtain an intact fetus, or to donate eggs in return for help in having their own baby through IVF; it is also intimately linked to a system of experimentation on lab-produced embryos propagated via cloning embryos which are genetic extensions of living individuals. Small wonder that participants in a Wellcome Trust research project into public perspectives on human cloning regarded the use of cloning technology in medical research as "good" only until they found out what was actually involved in practice: "as the participants' awareness increased, so did their concern and apprehension".120
The language according to which cloning technologies are just another medical "choice" for patients/consumers thus not only pretends that isolated individuals of equal power make decisions in a theoretical vacuum, but also conceals how resources are diverted in order to make that "choice" possible.
Privileging the role of genes not only plays down the contribution of social factors to ill-health, disability and disease. It also adds weight to the idea that ill-health is an individual misfortune -- to be tackled through making individuals aware of their genetic predispositions and then recommending to them individual programmes of risk-minimising behaviour.121
Yet while in many ways it seems reasonable to expect individuals to feel responsible for their health and that of their children -- they are the ones, after all, to whom it matters most -- it is also true that many of the "risk factors" for ill health are created or exacerbated by social institutions. To insist that health is an exclusively individual matter merely "protects those institutions that threaten individual health through discrimination, exploitation, pollution or iatrogenesis".122
Geneticisation, moreover, militates against making efforts for change which would be good for everyone's health, irrespective of their genetic predispositions. For instance, it creates an atmosphere in which a "safe workplace" is to be achieved not by cleaning up toxic production systems but by "weeding out the so-called susceptibles"123 or putting the onus on them to prevent their "predispositions" from becoming reality. Comments a worker at a major US car manufacturer:
"For years, companies have been saying that workers' diseases are not caused by what we work with in the plants, but by smoking, diet, lack of exercise, and other problems with our life-style. Now they're saying it's the workers' genetic heritage".124
Assigning genes to behaviours such as alcoholism and violence serves a similar social function. Concludes Ruth Hubbard:
"By erasing the social context, genetic predictions and labels individualise our problems, blame the victim ('If you get sick, it's because you have bad genes') and are authoritarian ('You should have had your genes tested and done what the doctor said')."125
Under the genetic model, the "right" to be born healthy becomes not a reason to clean up the environment but an argument for not implanting or carrying to term embryos and fetuses which do not pass their gene tests.
The efficacy of the genetic approach to public health is also open to question in that "predictive tests contain rather little information to live by, since the answers they offer are almost always couched in terms of probabilities and contingent on other factors".126
In addition, much "risky" individual behaviour is, on closer examination, not something susceptible in the aggregate to a moralising approach. Even if some individuals deemed to be at high risk of contracting a disease can be persuaded to change their lifestyles, this does little to influence the forces that encouraged the adoption of the lifestyles in the first place. Even as a few "at risk" individuals quit smoking, for instance, some children will be taking their first puffs.127
Nor do those who are informed about their "genetic predispositions" necessarily change their behaviour. In one US study, men in the highest 10 per cent of risk for coronary heart disease could not be persuaded to make more than minimal changes in their eating and smoking habits despite six years of intensive attempts.128 A 1998 survey concluded that many British young people aged between 16 and 24 years ignored public health campaigns to stop smoking, eat better foods and take more exercise.129
In many societies today, people attach value not simply to raising children, but above all to raising children which they have begotten or borne.130 To use the words of British IVF guru Robert Winston, "For virtually all of us, the only thing that we will really achieve is the production of the next generation. Other contributions are so insignificant".131 In industrial societies, in which the role of the extended family, friends and neighbours in childrearing has been downgraded (although many of those responsible for children still in fact rely on them), having a chance to be involved in raising children virtually requires having one's own. Human embryo cloning technology feeds on and reinforces these tendencies. As journalist Aminatta Forna notes:
"The reproductive industry holds a particular responsibility for the fetishising of genetics and, in particular, the fetishising of a shared genetic link with a child. In order to sell their 'products', large parts of the industry have successfully exploited the extraordinary grip ideas about genetics have rapidly gained in the public imagination ... The genetic child, the fantasy child, becomes irreplaceable as the receptacle for the hopes and aspirations of the parents."132
By claiming that they are merely serving the real need many people feel to have their own genetic children, companies and researchers will try to sidestep responsibility for the wider consequences of human embryo cloning techniques. While it is unlikely they would be able to find hundreds of women willing to rent out their wombs for an experiment just to see if a human Dolly could be produced,133 many women and their partners are only too willing to become guinea pigs if the promised reward is their own genetic children, as was shown by IVF in the 1970s.
IVF has accentuated a general feeling that knowing one's genetic inheritance is crucial, and has also indirectly helped devalue adoption. In Britain today, it is harder to adopt children than to find the money to have a course of IVF treatment (at least £2,000) at a time when some 70,000 children of all ages are waiting to be adopted in the country and only about 500 IVF babies are born each year. Adoption has become a last resort for parenting.134 Yet as biologist Barbara Ehrenreich points out:
"Millions of low-income babies die every year from preventable ills like dysentery, while heroic efforts go into maintaining yuppie zygotes in test tubes at the unicellular stage. This is the dread 'nightmare' of eugenics in familiar, marketplace form -- which involves breeding the best-paid instead of the 'best'."135
And again, while resources are poured into esoteric techniques for providing genetic children to women and men who might not otherwise be able to have the number of children they want, they are withheld from investigations into what might be causing infertility in the first place. This is happening at a time when chemicals which mimic the action of oestrogen are increasingly believed to contribute to the decrease in sperm count and quality, and when the incidence of the sexually-transmitted disease, chlamydia, which scars and blocks women's Fallopian tubes, is on the rise in Britain, particularly among young women.
The increasing focus on genetics in medicine and on the potential benefits of human cloning techniques dovetails with and reinforces a fantasy common in the West that all disease can someday be treated, cured, and finally eradicated through technical means. Dr William Schwartz, author of Life Without Disease: The Pursuit of Medical Utopia, asserts that:
"our exploding knowledge of the genetic mechanisms of disease make plausible the once impossible dream of a largely disease-free existence ... The possibility of a broad-based victory over disease and a dramatic increase in the human lifespan in the not too remote future must now be taken seriously."136
It seems appropriate to remember that "utopia" is derived from the Ancient Greek word meaning "nowhere" -- it does not exist.
A quarter of a century ago, too, there were euphoric proclamations that the Western world at least was on the verge of "eliminating death due to infectious disease". Yet many agents of infectious diseases have developed resistance to drugs and chemicals and many new diseases have emerged as disease-causing pathogens have evolved and travelled, ecosystems altered, and climate changed. Most scientists now talk of "disease turnover" rather than the elimination of infectious disease.
The genetic model of medicine also provides materials for rebuilding the dream of conquering old age. As Richard Zaner of a Tennessee hospital comments:
"Death itself is now often medically interpreted ... as little more than a genetic error in the body's somatic cells -- a disease in that sense, susceptible of being forestalled or even prevented."137
One of the main advertisements for human embryo cloning is that it can produce an unlimited number of tissue-matched replacement body organs for transplant. Any questions about where the technology might be leading can be forestalled with the unanswerable retort: "The dying people who need transplants ... do not wish to die."138 More fanciful souls, hoping to escape altogether what social critic Ivan Illich calls human beings' "consciously lived fragility, individuality, and relatedness" in which the "experience of pain, of sickness, and of death" are a part of life, even look to cloning for immortality: "I may die, but if I am cloned, I won't die".139
Everyone seems to agree that more public debate and discussion, education and information about human embryo cloning and genetic engineering are needed, and more democratic decision-making. But what will be debated and discussed -- and what not? What information will be provided -- and what not?
In the wake of the storm of controversy over genetically-engineered crops, it is obvious that proponents of human embryo cloning techniques and genetic engineering will need at least tacit public acceptance of their projects in order to proceed.140 One British strategy for gaining this acceptance has been to test how squeamish the public is, stop the scientists there temporarily, and then ridicule or educate the "yuck factor" away so that the line can be gradually inched forward. As one University College London report concluded:
"The rate at which the general public can be reassured about the underlying technology is likely to be the single most important factor influencing the rate of uptake of genetic technology for health care."141
Here it is critical to channel debate in certain directions and not others. For example, the Chair of Britain's Human Fertilisation and Embryology Authority, Ruth Deech, has urged the importance of making the public "aware of the therapeutic benefits" of cloning -- but not the importance of making them aware of how the therapeutic benefits are to be obtained, or of their "disbenefits".142 As Wellcome Trust research into attitudes towards human cloning has discovered, the general public found it harder to comprehend why a sheep had been cloned than with dutifully learning how. Such "why" questions, the Trust concluded, led all to easily to the conclusion that the Dolly experiment had been "strictly for commercial gain".143
Similarly, the Royal Society, Britain's oldest scientific institution, "favours a wider and well informed public debate of the scientific, technical, ethical and moral issues"144 but does not mention economic and political issues. On the other side of the world, senior Australian judge Michael Kirby warns scientists and biotech companies that:
"unless there is a proper, thorough explanation to the community of the scientific arguments for cloning, the natural response of a community ignorant of the potential benefits is to simply say 'this is unnatural ... We should ban it'".145
Kirby does not say whether scientific or other arguments which might cast doubt on these potential benefits should also be explained.
If previous experience with "sensitive" new technologies (such as IVF was once) is any guide, the crucial benefits which are likely to be stressed are those which would potentially accrue to individuals who can elicit public sympathy and demonstrate the existence of "demand": the distressed woman who cannot have children; the young, promising sufferer of a rare and fatal disease; the accident victim dying for want of an organ transplant; perhaps even the young girl whose social life is crippled by shyness. If enough real-life stories of individual tragedies which could supposedly be averted through scientific progress can be played out one after the other on news programmes or documentaries, it will seem churlish to ask questions about public health systems, inequity, distribution, exploitation, racism, eugenics and corporate control, all of which will recede safely into the background. Points out journalist Anne McElvoy, "scientists have been round this course many times before, and will respond by presenting the most persuasive examples of the benefits of their work."146
Nor will it be easy to bring up the awkward fact that many of the new treatments do not achieve their goal, or that they result in new problems. For example, genetically-engineered human insulin, which has been available since the early 1980s, is often touted as evidence that gene research yields benefits. The two companies which manufacture the product, Novo Nordisk and Eli Lilly, have denied that it might have negative effects. Yet many patients claim their lives have deteriorated after switching to the genetically-engineered version. Up to 20 per cent of diabetics taking it can no longer control their symptoms and can go into comas without warning. Doctors and specialists have, by and large, ignored patients' distress and dangerous symptoms.147 Only as a result of campaigning by insulin-dependent diabetics has animal-derived insulin once again been made available; and even then, only in some countries.
Similarly, even after two decades of use, it is not often reported that IVF still boasts at most a 20 per cent success rate, bringing "intense disappointment" for women who "walk away from the IVF clinic childless";148 nor that the number of British children born through intra-cytoplasmic sperm injection (whereby a single sperm is injected into an egg) with birth defects appears to be twice that of children conceived naturally; nor that five-year survival rates for heart and liver transplant recipients are still only 64 and 55 per cent, respectively.149 Where "failures" are mentioned, it is likely to be only in those contexts in which they can be used to justify yet more research. Thus IVF practitioners are likely to refer to the low success rate of IVF only when they are arguing that more embryo research is needed in order to increase it.
One side effect of the PR-like focus on benefits to certain individuals is likely to be increased squabbling among different sectors of society over which diseases genetic research efforts should focus on -- the "my-disease-is-more-important-than-your-disease" syndrome. Questions about how everyone's health might benefit from basic and affordable public health, disease prevention and pollution control measures may well be obscured in the smoke raised by such disputes. As Ruth Hubbard stresses, although high-tech treatments can turn out to be a "real boon" to a limited number of individuals, they unfortunately "drain resources away from the kinds of public health and medical measures that could improve the health of a much larger number of people".150
As more and more dramas about the triumph of genetic science over human tragedy are played out in the public media, ethicists are likely to continue to ponder, for instance, the "philosophical implications for personhood" before invariably giving their stamp of approval to the new cloning developments -- again without considering the social, economic and political context.
More often than not, ethics commissions and committees are put together and asked to investigate and pronounce on controversial technologies only after they have been developed.151 As social scientist Daniel Barben points out, instead of guiding or restraining genetic intervention or the further commodification of nature, ethics:
"are now increasingly being pressed into service as legitimation for precisely these projects. Ethics councils are being set up to signal responsibility, and institutes of ethics are being established to develop arguments legitimising what is currently still regarded as ethically reprehensible."152
As with calls for more public debate, analyses of economics and power politics usually get left out of these exercises.153 For instance, the ethics advisory board of Geron averted its gaze from issues of the classification, control or commercialisation of cells derived from aborted fetuses or "leftover" IVF embryos. This omission:
"only highlights the tension between the altruism individuals are supposed to exhibit by donating their tissue for research and the current patent system, which encourages companies to stake lucrative property claims in that research."154
Similarly, a US government project assigned to predict the ethical, legal and social implications of the application of knowledge derived from the human genome project (the worldwide effort to map all the genes in a "standard human") is not allowed to raise ethical, legal and social questions about whether the project ought to continue or not.155
Critically, public debates on where to "set limits" or how to "ensure access to benefits" divert attention from broader questions of what kind of wider health care system people want, and from questions about the nature of health and disease.
If cloning is the answer, what was the question? If the question was how to improve health and quality of life for all, cloning and human genetic engineering are probably not the answers. If the question is how to keep an existing health care system and industry going, then it scores nine out of ten. Just as in agriculture, genetically engineered crops may (supposedly) result in fewer applications of chemical pesticides for some farmers, which would be a benefit to people and the environment; but what is problematic is the application of chemicals in the first place. Most debates and consultations fall into the trap of assuming that the status quo -- whether embryo research or the sale of human body parts -- is acceptable and that the only questions needing examination are the supposedly new ones.
In reality, many of the most important issues that the prevalent discourse on human embryo cloning and genetic engineering obscure are far from new. For decades, health professionals and activists have been struggling with, for instance, the way individuals' health has been divided off from, and given a privileged position over, public health; the importance of tackling environmental and social causes of ill health; the question of who is responsible for health. Human embryo cloning techniques and associated practices merely bring new dimensions to these familiar debates.
For centuries, societies have contended with issues about who gets born and raised and who does not; who gives birth and who does not; who raises children and who does not; who lives and who dies. Eugenicists have always argued that parents try to give their children the best start in life by providing them with education, food and so on: why not also try to give them the "best" genes possible? Human embryo cloning and related techniques add no new concepts to this argument but, if realised, could provide new resources of power and control -- ones which would be made available not just to prospective parents, but to state and medical institutions as well. As a University College London report acknowledges, "modern genetics would ... allow [eugenic or racial improvement] processes to be instituted in a precise and discriminatory way."156
This is not to suggest that debates about benefits are not an important and necessary part of the "ethical" discussion. But by themselves, they do not encourage the essential:
"larger conversation about the fabric of social relations that sale of biotechnologies feeds on or promotes; nor about the dimensions of the common good that biomedical research can or should serve; nor about the sort of communal relations that exchanges of certain goods, labour, expertise, and services might reflect or produce; nor about determining criteria for deciding which possible objects of 'equitable access' are deserving of communal resources."157
The potential of cloning technologies may not be realised -- indeed it is not even close to being realised. Even if it were, however, and even if the technologies were legalised, it is unlikely that their use in producing babies and spare parts, or for other ends, would become widespread. That much is suggested by the fact that since 1978, just 500,000 IVF babies have been born worldwide.
Attempts to promote cloning technologies, however, will affect us all. No aspect of human existence will remain unaffected by discoveries in human genetics -- irrespective of the new science's predictive accuracy or therapeutic efficacy. In their increasing claims on our attention and our resources, the new technologies will shape the way nearly everyone thinks. In that sense, it is not the spectre of cloned humans that should give pause as much as what the readiness to clone humans says about the way society is being organised.158