Social Issues Raised by Gene therapy
This article derives from a talk given by David King at the annual meeting of the UK Gene Therapy Advisory Commission ion 1997
First of all, I would like to thank GTAC for inviting me to speak today. My job is to talk about some of the social and ethical implications of gene therapy. I also want to look at some aspects of current society and how they affect gene therapy and the arguments around it.
Firstly, I want to start by making an assumption that we've already heard may not be justified. I'm going to assume technical barriers to the efficacy and safety of gene therapy will soon be solved. I will assume that, in a few years, gene therapy will be routine. I realise I'm open to the accusation that this is a fantasy. The reason I'm doing so is that there is a tendency in conventional medical ethics to dwell on the issue about risks to the patient; this is a diversion from what I want to talk about, which is primarily the social relations of gene therapy. I would add that my experience as a biotechnology watcher for the last few years is that it is always a mistake to think that things will not happen very quickly in biotechnology.
My point is that if gene therapy does become routine, it has huge and profound implications for society, not only because of its own power, but because part of a suite of technologies in which I include genomics, reproductive technology (including cloning), and tissue engineering. Few of us have yet begun to think through the implications of what may be possible from the combination of these technologies.
Conventionally, the applications of gene therapy are divided into four categories: somatic treatments for medical, conditions, somatic enhancements, germ line treatments for medical conditions and germ line 'enhancements. The first area I want to concentrate on is somatic enhancement.
The main point that I want to get across here is that, in the current social climate, it will be very hard to resist somatic enhancements. This will happen for a number of reasons.
Firstly, it is notoriously hard to define, in principle, what is an enhancement, and to differentiate that from medical conditions. For example, are obesity and memory decline in old age a normal part of the human condition, or pathologies to be vigorously combatted? What makes it even more difficult to draw clear lines is that science is constantly shifting the perceived boundary. There is strong tendency that once something becomes technologically manipulable, it becomes seen as a problem.
The second reason why it will become hard to resist the use of gene therapy for cosmetic/enhancement purposes is the current acceptance and fashionableness of other forms of enhancement, such as cosmetic surgery. There are now many doctors who grew up and went through medical school wanting to cure the sick and alleviate human suffering, who are now doing facelifts and liposuction. Enhancement is not restricted to the surgeons knife: in the US thousands of short children who have no growth hormone deficiency are being treated with human growth hormone, although there is no evidence that the treatment even works, in the long term. This is an example of the use of biotechnology to change people's bodies in order to conform to oppression. Another example is the use, by millions of black women of highly toxic chemicals to bleach their skin. I think you can imagine the uses to which a 'gay gene' or genes would be put were such a thing were to be discovered. A conventional argument for the medical uses of gene therapy is that it is, in essence no different form other types of medical technology: if that is the case, I cannot imagine how, if society approves or at least tolerates all these other enhancements, we can make an argument that we shouldn't do the same kind of thing using gene therapy.
The fact is that science is not merely changing the barrier between disease and 'normality': it is changing our whole conception of what it is to be human. There is an increasing reluctance to accept any predetermined limits of our biology and a tendency to regard human body as being perfectible. The craze for body building is part of this. At another level, there is a renewed thrust in medicine and in the culture as a whole to defeat death entirely, hence the popularity of cryogenics in the USA. When gene therapy becomes familiar, we will start to see our genes as less finalised. People are increasingly coming to feel that they are no longer stuck with the body they were born with. The definition of the human condition has now become a function of technology.
One reason why this happening is that you can make money out of it. There is an increasing industry being built up around human tissue and body parts and the patenting of cells and genes. I also think one of the social reasons for the boom in enhancements is post-modern boredom, disillusionment and cynicism about human condition. The only place where there is hope for a better future, is in technology in general. In this context, we are seeing a whole suite of body technologies satisfying our hope to change the human condition through better bodies, living for ever, eliminating diseases, etc.
The bottom line, is that with the social pressures and the commercial pressures, doctors' hopes to restrict gene therapy to medical uses are simply a fantasy. There is already a company developing gene therapy for baldness. The bioethicists have already given up the struggle, because there aren't any ethical arguments against somatic enhancement that other bioethicists can't demolish easily enough. A few years ago there was a book published with the subtitle, 'Gene therapy and the retooling of human life'. In one sense, of course, this is hype, but in broad perspective this may be what we're looking at over the next twenty years. If we want to tackle this problem, we have to tackle that whole tendency in society not to accept any limits imposed by biology. But from where I'm standing it looks unlikely that we're going to stop this juggernaut. It seems to me that those people who invaded the RAC back in the mid-1980s were right when they said that allowing medical uses of gene therapy would inevitably lead to enhancements. The genie is now out of the bottle, and the only barrier left is at the germ line.
Germ Line Engineering
The most interesting thing about the debate about germ line engineering is that it's happening at all. This is not simply because of the current technical barriers: that is where Dolly the cloned sheep comes in. The technique used to produce Dolly will very quickly deal with the major efficacy and safety problems of germ line engineering.
The real reason why it is surprising that there is so much discussion of germ line engineering is that there is no serious argument for its medical use. This is one reason why I cannot bring myself to call it 'germ line gene therapy'. In all except rare cases, there are the options of prenatal diagnosis or pre-implantation diagnosis to prevent transmission of disease-causing alleles. (I want to emphasise that I view pre-implantation diagnosis, were it to become widespread, as every bit as dangerous as germ line engineering). In the rare situations where pre-natal or pre-implantation diagnosis would not solve the problem, there is always the option of sperm or egg donation. Finally, not having children, and adoption are traditional possibilities. I would argue that for those couples who are sufficiently concerned about passing on disease-causing genes, these latter possibilities are most appropriate. We should re-examine the current fetish with biological inheritance.
An argument for germ line engineering which is sometimes advanced is that it would be possible to ensure that children are not carriers of recessive genes. People say that they wouldn't want their children to have to worry and to deal with the difficult reproductive dilemmas that they themselves are having to deal with. I have every sympathy for the difficult position such people are in, but worry and difficult dilemmas are part of life. They are best dealt with by counselling or psychotherapy. This certainly does not seem to be an adequate reason for developing germ line engineering technology.
In short, it seems to me that it would be completely irresponsible, for the sake of a very few people, to drag us into what would be a new era of human history. In my view, germ line engineering would be a disaster far greater than cloning. There should be an unconditional international ban on germ line engineering, and funding agencies should not fund projects which aim to develop such technology. There are many reasons for this, which have been widely discussed. One of the most obvious is that, as already discussed, once it has been done to eliminate harmful genes, there will be no way to resist pressures for use for enhancement. A few years ago the UNESCO international Bioethics Committee addressed gene therapy, on a bioethical level. As mentioned above, they could find no sufficiently compelling ethical arguments against somatic enhancement or 'medical' use of germ line engineering; yet the committee failed to see that once these two premises are accepted there can be no logical argument made against germ line enhancement engineering. The simple fact is that the main potential of germ line engineering to do things that cannot be done better by other means lies in enhancement.
As noted above, the really interesting thing is why some people keep arguing against a ban. Part of it, I think, is just boring old scientific careerism, part of it is philosophical careerism and the need to be fearlessly saying something different from everyone else. In some of the pieces I've read there are very strong eugenic overtones.
But there are three very basic things that lead people to entertain the idea of germ line engineering, which are very nicely spelled out in Professor Wivel's article that he wrote with LeRoy Walters in Science a few years ago. I want to critique these not because I want to say something different, but because I genuinely believe that if we want to stop germ line enhancement and full scale eugenics, we're going to have to have a reassessment of some things we take for granted.
The first is what I would call the medical imperative, ie. the idea that relieving human suffering is the supreme ethical value, to which everything else must be subordinate. I won't go into a long philosophical argument here, and I know all the defects of utilitarianism, but I do think we need an equation where we weigh the desires of a very few people to have children against the need of the entire global society not to be dragged kicking into a new age of human history. We need an re-assessment of the medical imperative to physically intervene to cure and prevent suffering and a recognition that there are limits to medicine, which come not only from patient autonomy but from the legitimate interests of society at large.
The second argument that Wivel and Walters deploy is parental reproductive freedom. Again I won't go into a long argument, but I think we need a reassessment of this. It is simply not good enough to say that we cannot interfere with people's deeply held moral views and desires to protect their children. Under the rubric of patient autonomy, current medical ethics, (especially in the USA) has laid excessive emphasis on reproductive freedom, which is clearly part of a larger political over-emphasis on freedom from state interference. Reproductive freedom is an important value, but not an absolute value. When we treat it as an inviolable absolute, we open the door to a consumer- or market-driven eugenics. This issue is more pressing in the area of genetic testing and screening than with germ line engineering, but the same point applies. There are some choices that people simply should not be offered. We are going to have to reassess the idea that parental reproductive freedom shall not on any account be interfered with.
The third underlying force driving development of germ line engineering is what Wivel and Walters call, correctly, the basic ethic of science: that knowledge is necessarily good and scientists should be allowed the freedom to pursue it. To challenge that idea is probably the most difficult of all, and again, it's a long argument. I will just put to you again the interests of society at large, and the concept of responsibility: that if it is clear that the predominant applications of a certain line of research are highly negative, as here, then it is irresponsible in the extreme to pursue that work for the sake of satisfying intellectual curiosity, or seeing if it can be done. And I will also give you a warning that you probably won't need if you read the newspapers: that the people who pay for the publicly funded research are getting pretty fed up with not being consulted about it, and then being prevented with faits accompli like Dolly. That is not going to go on for ever.
So, Mr chair, ladies and gentlemen, I'd like to finish off with the thought that we are at a historical crossroads. The forces pushing us towards the wholesale retooling of human life are both social and scientific and they're very strong. But in no sense is it true that what can be done must be done, and I think the forces of decency and resistance are strong too. At least, I hope so. Thank you for listening.
David King, 6 May 1997