This paper is a kind of report on a conference on “Genetics, Identity and Justice” conducted at Merton College Oxford in March-April 1998 and a reconstruction of what I said there. The Conference was organised by the 21st Century Trust, an organisation established to bring together small groups (up to 25) young scholars and professionals from around the world to engage in intensive discussion of a major topical issue in the company of some acknowledged experts, and in the process to build up an expanding international fellowship. (I was told that I barely made it under the bar as a young academic, and would be the only person coming from quite so far away, but that if I were willing to be both a participant and give a paper they would help fund me!) While the 21st Century Trust paid most of my costs at the England end, I was generously assisted in getting there by a travel grant from the Ian Potter Trust and some additional assistance from the John Plunkett Centre for Health Care Ethics and the Australian Catholic University: to all of whom I record my thanks.
The Conference turned out to be the best one I have so far attended because all had done the considerable pre-reading, the number of participants was small enough for all to get to contribute, most of the time was given over to discussion rather than presentation of papers, the conference was very well focused, and we were school-marmishly encouraged to do little else but talk, eat and sleep genetics.
The participants were not all ethicists by any means: their backgrounds included research genetics, medicine, psychology, sociology, political science, law, policymaking, insurance, biotech marketing, journalism and women’s studies as well as a sprinkling of the philosophically educated. All were, however, intelligent, interested and tolerant of each others’ opinions. The ‘mentor’ for the Conference was Ronald Dworkin, Professor of Jurisprudence at both Oxford and New York and a world leader in political and legal philosophical issues in bioethics. He gave the opening paper which in many ways set the terms of the week’s discussion, and I will report something of its content before giving an account of my own paper.
True to form, Dworkin argued strongly for the right to reproductive liberty, including the right to genetic tests, pre-natal screening with a view to aborting those children who will otherwise have frustrating lives, embryo experimentation, selection and destruction, IVF and other reproductive technologies, and genetic engineering, including cloning, on the usual liberal grounds. He likewise argued for insurers and employers being entitled to require genetic tests of adults, children and the unborn and being permitted to exclude the genetically disadvantaged from insurance, as long as there is some state-provided safety net for the victims of genetic ill-fortune. While he recognised that there might be arguments for and against cloning and the like from the point of view of their external consequences (what he calls ‘derivative values’), he thought the dangers rather overstated. The widespread hostility to reproductive cloning and the like is simply mass hysteria, unsupported by serious argument; vague appeals to the unnaturalness or playing-godness of such activities had so far failed to give us any real reasons to oppose such activities, let alone ban them as several jurisdictions have done. Dworkin’s diagnosis: at issue here is a major shift in the chance/choice boundary that structures human expectations and values; during such a period of change people will be afraid not just that genetic engineering is wrong but that they are losing their grip on what is wrong; but that such changes implicate no value, derivative or detached, at all. “Playing God is indeed playing with fire,” he concludes, “but that is what we mortals have done, since Prometheus, the patron saint of dangerous discovery. We play with fire, and take the consequences, because the alternative is an irresponsible cowardice in the face of the unknown.”
I will not rehearse the discussion that followed, or the various further papers that initiated the intense discussions that made up the week. Dworkin’s challenge to all the participants was to try to give a reasoned account of public hostility to cloning and the like. Most of the philosophers we heard agreed with him: Derek Parfit (All Soul’s Oxford), John Harris (Manchester), Justine Burnley (Oxford and Manchester), Janet Radcliffe-Richards (Open University) and John Padfield (Biotech company director turned amateur philosopher, of Glaxo and Chiroscience), all though genetic engineering was fine and opposition to it irrational. Dworkin called the philosophers in attendance “the friends of playing god”. The policymkers were similarly disposed: Sir Colin Campbell (Chairman of the UK Human Genetics Advisory Commission), Sheila McLean (Medical Law and Ethics, Glasgow) and Alain Pompidou (Cytogeneticist and MEP, the leading European policymaker in this area) thought we should go slow’ until people caught up, even banning things like cloning in the short-term, but with a view to gradually easing the frightened masses into accepting genetic engineering in the long-run. Like Dworkin and the other philosophers, these public policymakers could not see any ‘detached values’ at stake in such projects, even though they were rather more comfortable with the rhetoric of respect for human dignity than the philosophers were. To my considerable surprise it was the scientists who had the most misgivings about these technologies: Alan Colman (Roslin geneticist who made Dolly the Sheep), Stephen Rose (Neurophysiologist turned philosopher at the Open University), Alan Bittles (Geneticist from Dublin and Perth) and Theresa Marteau (Psychology and Genetics, Guys’ and St Thomas’ Medical School London) all expressed grave concerns about the application of the new genetics to human reproduction. And the young participants were in general equally ambivalent.
I was cast as ‘the theologian’ (although there was also an Anglican scholar and a Muslim one in attendance at my session, which helped me seem the moderate in the circumstances) and my official task was to give a religious perspective on these things. Ronald Dworkin found my language rather too philosophical or accessible for his liking: he had hoped, I suspect, to dismiss all my arguments as arcane and mysterious religious gobbledegook. But he also helpfully cast me in the role of the one best placed to articulate the reasons (if any) behind popular disquiet about cloning and the rest. (It struck me as fascinating that, as a priest, I was repeatedly appealed to as the one who would understand what ordinary people thought when philosophers were bamboozled.)
Rather than attempting a survey of the vast literature that has already been generated on Christian faith and genethics, I began my presentation by merely recording a few of the mainstream conclusions:
Human beings are called to be stewards or co-creators of God’s creation, including human life itself, and to share in Christ’s healing mission.
Prudent therapeutic interventions aimed at correcting genetic diseases and preventing their occurrence or onset are in principle good uses of genetic science and healthcare.
Respect for the sacredness (dignity and inviolability) of human life, as made in the image of God, counsels caution in experimentation.
Genetic screening with a view to eliminating disabled unborn or newborn children raises the usual moral problems associated with abortion and infanticide, as well as an additional problem of discrimination against the disabled.
Respect for the integrity of human nature, human diversity, procreation and parenting, and wariness of eugenics, counsel caution with regard to genetic enhancement.
Concerns about community, justice and equity arise with respect to access to genetic knowledge, power and resources, and with respect to personal privacy and discrimination.
Genetics as co-creativity and therapy
Some people regard dabbling in human gene science as immoral per se because it is ‘playing God’ or ‘interfering with nature’, a kind of hubris or ‘trespassing on forbidden territory’. I will come back to this idea at the end of my paper. For now it is enough to note that Ronald Dworkin and others are clearly right when they respond that we ‘play God’ in the sense of intervene in nature all the time, especially in medicine, and few would erect a theological ‘do not disturb’ sign against all artifice. Thus leading theologians such as Rahner, Gustafson and Häring have been enthusiasts for improving the human condition through courageous but ‘cool-headed’ genetic technology. Rahner even suggested that to resist human genetic self-manipulation “would be symptomatic of a cowardly and comfortable conservatism hiding behind misunderstood Christian ideals”.
But how far can we go in the exercise of this God-like and God-given initiative and freedom? Is reproductive cloning properly within the scope of human interventions in nature, as several of the presenters at the Conference suggested? Questions about the scope and limits of human stewardship over creation have a long pedigree in Judeo-Christian thought going back to the Garden of Eden, so to speak, when the first natural scientist, Adam, rightly classified the animals but then overstepped God-given boundaries with respect to a plant. Jesus, whom Christians call the second Adam, rejected the Adamic temptation to assume a rôle independent of and ultimately at odds with God. Yet he called his followers to be rather more than passive recipients or conservators of creation. In his stewardship parables, for instance, Jesus charged his disciples to be faithful, responsible, creative stewards of God’s gifts, including their own talents. Thus theologians such as Arthur Peacocke use the nomenclature of synergy, co-creation, co-working or co-exploring to explain the relationship of human beings with God in these areas; others (especially the more meticulously Protestant) have preferred a language of sub-creation under God.
Add to this the Christ-inspired concern of Christians to confront the evils of sickness and death, and it is not surprising that most Christian thinkers from the Pope to mainstream Protestant theologians, have supported gene therapy and appropriate genetic testing with that in view, provided they are conducted with due caution and respect for human dignity.
Genetics as a search and destroy mission
Yet as the Regius Professor of Medicine at Oxford, Sir David Weatherall, told us at the Conference, no successful somatic cell gene therapy has yet been achieved and it may well be still a very long way off. Another leader of British biotechnology, Dr Nick Scott-Ram, who is a member of several industry and government authorities regulating biotechnology and patenting in the UK and the EC, expressed strong doubts about whether gene therapy will even happen on any significant scale: it would be too expensive and help too few people at a time when fewer and fewer people with the single gene disorders are being born anyway. Scott-Ram thought talk of gene therapy was mostly hype generated in the hope of receiving funding for other projects and freedom from regulation. What all the scientists at the Conference were agreed upon was that the principal practical application of this technology at the moment and for the foreseeable future is diagnostic.
The question is, then: why seek to test for various genetic characteristics. If some undesired genetically caused characteristic is found there may be various morally unproblematic therapies, life-style changes, procreative decisions, preparations and accommodations possible to improve the person’s lot and that of their carers. But where the unborn child is diagnosed as carrying some major disease, the mother is likely to choose or indeed to be steered (non-directively of course) towards a genetic termination of pregnancy.
In a moving article about his daughter Domenica who has Down’s Syndrome, Nigel Lawson wrote about the complicity of genetic technology in the current search and destroy against Down’s babies. Cystic fibrosis, spina bifida, Down’s, predisposition to heart attack: where will it stop? Dworkin suggests that the lives terminated on genetic grounds should only be profoundly frustrating ones or those who present a catastrophic threat to others. Whether either is true of babies with Down’s is a moot point. In any case Weatherall told us that these tests are already being used for diagnosis followed by genetic abortion for much more trivial conditions.
Personal preference and social pressures on parents to produce the perfect child and abort any imperfect ones are already there. And they are likely to grow. A couple who choose not to have a test for, or not to abort a child with, say, Down’s, may well be regarded as backward, superstitious, selfish, socially irresponsible, even criminal. While Dworkin and Harris as good liberals told us in their formal papers that people should be free to use genetic testing and enhancement, they said in discussion that they thought parents had a moral obligation to do so. Justine Burnley, a new member of that philosophical dynasty, who teaches in both Oxford and Manchester, told the Conference that in her view it was obscene for any mother to continue with a pregnancy if the child was diagnosed with such a condition; she thought coercive measures appropriate against such abuses of ‘reproductive liberty’ as going ahead with a Downs baby. What, we might wonder, will become of those who escape the genetic screening net and are born with genetic defects in such a world: far from being welcomed and given every opportunity by a sympathetic human family, these children may come to be regarded and treated as parasites, a drain on limited resources and sympathy.
Who decides which genetic qualities warrant death, before or after birth? On what basis? And in whose interests? Eugenics, far from being a Nazi German or Chinese monopoly, has been practised more or less systematically in many societies. As Sheila McLean adverted to in her paper, prior to 1965 60,000 Americans were non-consensually sterilised and many more aborted because they suffered such *supposedly-genetic conditions pauperism and ‘feeble-mindedness’, and similar programmes have recently been exposed in several other countries carried out well into the 80s and 90s. Even accepting that medically provided (and, in most Western countries, state-funded) prenatal screening with a view to genetic abortion is less systematic, less directed to the race than to the more immediate family, sometimes even motivated by pity, it remains that it is search and destroy for the handicapped. It is entirely possible that new-age genetics will facilitate the re-emergence of age-old prejudices against the disabled whether or not we think ‘eugenics’ the appropriate descriptor for such acts and intentions.
Thus I share the concern of Pope John Paul and others that an exclusivist mentality that would deny solidarity with those who are different to ourselves or who call forth from us some degree of self-sacrifice. The view that the handicapped are better off never born, never existing, is very much at odds with the Christian gospel which values every human being as a sister or brother, relativizes all handicap, and emphasizes the power of the weak to minister to the strong; but it is also contrary to the principle of justice, shared by many people of all religions and none, of equal respect for the dignity and life of every human being, especially the vulnerable and powerless.
The exponential growth in targets for genetic search and destroy
Until recently the targets of genetic search and destroy have been those with severe handicaps who could easily be identified in utero or soon after birth. But the list of those handicaps is growing, partly as a result of increased technical capacity to identify more and more of them, more and more accurately; and partly as a result of the line moving as to which handicaps are regarded as incompatible with worthwhile existence.
I was once consulted regarding a case of a dwarf couple who presented at a hospital pregnant and requesting genetic screening. On being told their child was perfectly normal they declared that they wanted an abortion. The clinical staff were aghast: despite long experience of abortion on demand, they had never before faced a case where a child was to be aborted specifically because she or he was normal! The case raised for them all sorts of questions about the nature of health and handicap, and whether individual parents, medicos or societies are entitled to decide which conditions warrant the death of a child, whether in the child’s best interests or the interests of others.
Dworkin suggests that sex-selection of embryos, if not of fœtuses, is unlikely in countries like ours. Harris thinks it probably does not matter. I am not so sure. As people get more and more used to testing their unborn children and choosing what they want and don’t want, genetic testing could easily become a new tool for the oppression not only of the disabled but also of women even in the West. Helen Holmes’ study of young US couples found that nowadays most want two children, preferring a boy first, then a girl. Egalitarian as this fifty-fifty mix might sound—compared to the preference for boys-only in some other cultures—it would if widely practised confirm sexism and lead to a demographic imbalance because many would never get around to having their second child.
The cover feature in the April 1998 number of Life magazine confidently included the following qualities among those entirely or largely genetically determined: eye, hair and skin colour; body shape and athletic prowess; intelligence of various kinds; insomnia, blood pressure, migraines, depression and psychosis; shyness and aggressiveness, risk aversion and thrill-seeking, optimism, extroversion and alienation, leadership and career choice; æsthetic sensibility, sexual orientation, tastes and addictions; and, I was interested to learn, religious conviction. Nor are such claims the preserve of pop magazines: David Roshland, the editor of the prestigious journal Science, even attributed homelessness and unemployment to genetic defects!
If genetic factors are indeed identified as contributing to many of these qualities, children who do not measure up to parental and social expectations may be targeted for destruction. I am far from confident that talk of multi-factorial causation, the importance of environment, the ambiguity of test results, and so on, will do much to stop that. One recent study found that three-quarters of young Americans polled would choose abortion if told their fœtus had a 50% chance of growing up to be obese. Fat baby tests may well be on the market within the decade. The target group for genetic screening and destruction is growing all the time.
Some pervasive distortions in the genetics debate
Such attitudes, if facilitated by new technologies, could drastically affect our social fabric. Yet they also represent some more pervasive distortions. The first is the all-too-common reduction of people to their genes: there is little or no scope for nurture in this picture, despite occasional lip-service; nor is there space for free-will or personal choice, the practice of virtue, the cultivation of character, or conversion, in all this talk of genetic predestination.
A second distortion is the focus on reproductive liberty to the exclusion of adequate consideration of the implications for particular others, for the broader community, for the intrinsic morality of the actions themselves and for their reflexive (character) effects upon the agent. One does not have to scratch far beneath the surface of many of those who argue that parents should not only be given access to the new genetic technologies to find they actually believe that parents have a duty and perhaps should be compelled to use them. But even if we take the liberty rhetoric seriously, the harsh reality is that we are in an area where people’s information is very limited and their anxieties great, they easily find themselves on an obstetric-genetic treadmill, they receive directive medical advice and genetic counselling, they are under enormous social pressures (such as Weatherall described in Sardinia where couples dare not have a child with thalasemia ), and they have few real options in communities which offer precious little support to those with handicaps and those who must care for them. And as we heard yesterday, raw ‘choice’ can be oppression rather than liberation in such circumstances.
Related to the reproductive liberty mindset is the tendency to regard parenting not as a trust received so much as a project chosen, not receiving a gift so much as going shopping. Leon Kass describes the difference this way: when a couple chooses to procreate, they come together to give or to risk giving existence to another being who is formed, exactly as they were, by what they are: living, bodily, mortal, imperfect, passionate beings. They say yes to the emergence of a new life in all its novelty, however that child turns out. Embracing the future by procreating means relinquishing some of our grip. For our children are not our children, they are not our possessions, not our projects. They are sprung from the past, but they take an uncharted course into the future. In genetically controlled conceptions, on the other hand, “we give existence to a being not by what we are but by what we intend and design. As with any product of our making, no matter how excellent, the artificer stands above it, not as an equal but as a superior, transcending it by his will and creative prowess.”
Genetic selection represents yet another grave imposition by parents of their preferences upon children and a further rejection of the traditional notion that “children should be accepted by their parents as a divine gift to be loved for what they uniquely are and not merely because they conform to the parents’ hopes and expectations”. Procreation becomes mere reproduction, replacing being begotten with being made, making children into quality-controllable commodities, and pregnant mothers into test drivers. And genetic screening has the power to detach us (both figuratively and literally) from our children, making every pregnancy ‘tentative’ and requiring of mothers a certain distance until all is judged well and good.
A fourth unfortunate tendency is the labelling opponents of any supposed ‘advance’ in biotechnology or proponents of any regulation as ‘religious’ (code for benighted, superstitious, authoritarian...) and/or ‘Luddite’ (code for hysterically opposed to all progress). It is not, it seems to me, fair ball to bracket out all concerns about the disintegration of reproduction from marital love, the decomposition of parenthood, the alienation and commercialisation of gestation, the commodification of offspring, the denial of rights to life and unconditional regard, the identity and kinship of children, and so on, as merely ‘religious’ or ‘symbolic’ concerns: they are principally about justice and other core values. Nor is it fair to group together everyone who is uneasy or even openly critical of some genetic technologies with Ayohtolla Khomeni or the unabomber.
A fifth distortion powerfully at work in the popular debate was well-expressed in our preconference reading from Lawrence Proulx who praised the eccentric Martine Rothblatt for “the courage” to take the development of human genetic technology “as a foregone conclusion and to openly celebrate its creative potentials”. “Ready or not, here it comes,” he declared. Yet as historian A J P Taylor was fond of saying, nothing is inevitable until it happens. It is up to human beings whether they build a nuclear bomb or not and whether they clone or not: there is nothing inevitable about it. The notion of the inevitable march of science leaves many people feeling paralyzed to respond but it should be unmasked for what it is: just one more ideology which can be criticized and resisted if we choose. Science, like art and religion, must be open to our critical gaze and applied with love and care not merely utopian enthusiasm or fatalistic resignation. Indeed the talk of inevitability, like the talk of Luddism, may well be a strategy by bioutopians to put their opponents on the backfoot.
Part of the same rhetoric is talk of theology, law and ethics needing to ‘catch up’ with or ‘keep pace’ with developments in genetic science. If by this is meant: keep informed about, reflect intelligently about, fine. But more often than not I suspect it means: accommodate to, provide the rationalisation for, do not resist, the technological applications. And that is something that people of faith or of plain moral sensitivity should never allow themselves to be dragooned into.
Conclusions on playing God
Is there a wisdom in the ‘yuck factor’ as it has so derisively been called, or the express fear of ‘playing God’, that natural repugnance which people feel and express with respect to much genetic engineering? In heroizing Prometheus—indeed canonizing him as a saint—Dworkin convicts of cowardice those lesser mortals who are unwilling to embrace an appropriate paradigm shift in morality and those who seek to avoid the temporary moral insecurity that will generate. All the talk of playing God is, he explains, the result of an irrational fear that the chance-choice boundary that structures traditional morality is under challenge and that morality will fall apart. I think that last point is well-made, although I would add a number of additional values and experiences challenged by the new genetics:
human nature, dignity, equality, individuality and community
freedom and fate, rights, duties, responsibility
conception, birth, life, parenting, lineage and kinship
embodiment, bodily integrity, health and normality
selfhood, identity, diversity and freedom
ageing, suffering and death
—all mysteries traditionally calling forth awe and wonder and a certain reverence for limits. Critics of some uses of genetic science need not be writing off all activity and progress in this area when they express the fear that, enchanted by the glamour of technology and profit, we may abdicate our responsibility to be true to our most fundamental values and commitments, and critically to evaluate and sometimes even to resist such developments.
Will a world filled with Dworkin’s Prometheuses, Harris’ wonderwomen and Rothblatt’s ‘inocuseeding’ be a better one? I wonder. I am yet to be convinced that we have the wisdom to apply these technologies well and to avoid the hubris of those who want everyone to be like them or to accord with their preferences or to conform to some social norm of the statistically average or otherwise idealised person.
In “The Wisdom of Repugnance” Leon Kass writes that “revulsion is not an argument; and some of yesterday’s repugnances are today calmly accepted—though, one must add, not always for the better. In crucial cases, however, repugnance is the emotional expression of deep wisdom, beyond reason’s power fully to articulate it. Popular abhorrence at incest, bestiality, cannibalism, the desecration of corpses—and here I would include cloning, crossing human and animal species, and non-therapeutic genetic engineering—may well be based on rather more than a fear of the new, whether in science or morality. It may derive from the fact that ‘we intuit and feel, immediately and without argument, the violation of things that we rightfully hold dear.’ Because something is beyond reason or words does not mean it is contrary to reason: the analytic dogma that strongly felt awe and deep-seated taboos are merely the worthless remnants of primitive belief systems fails to do justice to the ineffability of the sublime and the unthinkable. The ‘playing God’ complaint is certainly more than just certain people’s irrational fears. Certain things very naturally and properly cause as to pause, indeed sicken and bewilder us. The idea that there is a natural moral law, written on the human heart, a logic to human action, human nature and human relationships, which is worthy of reverence rather than resistance, of collaboration rather than conquest, has a long and noble pedigree. It demands that every moral emotion such as shame, remorse, pity and repugnance be subjected to a critical gaze and measured against our vision of the good life, the demands of practical reason and the qualities of the virtuous person. But as Kass rightly concludes, ‘shallow are the souls that have forgotten how to shudder.’
(V Rev Dr) Anthony Fisher OP
Australian Catholic University
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