Gene Therapy and Genetic Enhancement
For example, it is morally problematic when governments propose to sterilise or castrate or lobotomise mentally retarded or mentally ill or simply morally bad persons for social reasons. It is problematic when governments regard political dissidents as mentally ill, and confine them to insane asylums. It is problematic when a person suffering from ‘Body Integrity Disorder’ asks a surgeon to amputate his healthy limb. It is problematic in all these cases because medical treatment is being given to people other than with a view to their restoration to health, or to the prevention of disease.
To take the first of these examples, when governments sterilise the mentally disabled, this is usually condemned for two reasons. First, the patient is not in a position to consent. Second, the procedure is not in the medical interests of the patient—it is not aiming at their restoration to health. On the contrary, an aspect of the patient which is functioning normally, healthily, is subjected to a procedure designed to prevent it functioning healthily. Even if consent could make this kind of thing permissible, in this case consent is lacking.
It should be noted that the fact that patient is not in a position to consent makes it all the more important to make sure medical treatment is medically required. This principle is clearly going to be applicable to embryos and young children subjected to genetic enhancement.
In certain cases consent can make a non-therapeutic procure permissible. Giving blood would be an example. But where a serious and permanent harm is done to the health of a patient, other than to restore the patient to health (as when a gangrenous limb is amputated), consent does not seem to be sufficient to make it permissible. This is the case with Body Integrity Disorder. Those who want limbs amputated just because they suffer from an unfortunate desire, are refused treatment by conscientious doctors, because the treatment would do nothing to restore them to health.
The patient believes that the treatment would make him happier. The medical establishment replies that this belief is itself part of a mental illness. The patient may insist that he is mentally fine, and the doctor should get on with it. We have a disagreement here, and it is important to note that both sides are obliged to appeal, not simply to the importance of satisfying preferences, but to an objective notion of health. Such disputes have raged about homosexuality: is it a medical condition, or, as the jargon has it, a way of being normal? A view has to be taken if we are to decide what treatment is appropriate or permissible.
What was wrong about the Soviet practice of confining dissidents to looney bins is that the dissidents were not truly mentally ill. The claim that they were, according to some strange Marxist-Leninist psychological theory, was simply implausible. Such claims have to be examined and debated, if they are to be used to justify medical treatment. Professor Savalescu apparently believes that we can talk about medical practice without talking about the concept of health, but he is wrong.
Savalescu draws on a series of examples which appear to make unclear the point I have tried to make clear. Food supplements to improve mental abilities, for example, and plastic surgery, do not seem to be attempts to restore health, but surely, he seems to be saying, they are not impermissible. In response, one may ask whether food supplements fall under the concept of medical treatment at all; there may be borderline cases here, of course. But insofar as we regard them as medical treatment, we can regard their function as properly medical, that is, as giving the patient a better state of health, of healthy functioning. There is no question at all, in such cases, of impairing function, of mutilation, which is the opposite of restoring health.
In the case of plastic surgery, what we have is a medical intervention which frequently does not seem to have the normal justification, of restoring health, unless having a large nose, or small breasts, is regarded as a disability, and not just a way of being normal. It may be that this is indeed how it is regarded by the patients, at least in conjunction with their own attitudes to their bodies. They may be wrong; they may be suffering from something parallel to Body Integrity Disorder. It may be better for the medical profession to offer counselling, rather than surgery, to perfectly healthy people seeking plastic surgery, as opposed to car crash or burns victims. On the other hand, it is clearly not such a serious matter as the examples I gave earlier, since there is normally no loss of function where plastic surgery is concerned. My aim here is not to settle the matter, but to point out that argument here is possible.
So, let us apply the principles I have been developing to the case of gene therapy. Gene therapy is a medical intervention; since it has permanent effects, which may be irreversible, it is a serious matter and demands serious justification. The justification it needs, like all medical intervention, is a medical justification, which is to say that it restores or preserves health. Thus, if a person had a genetic disorder which impaired life expectancy or function, and if this could be cured by gene therapy, whether this involved addition or subtraction or modification of genes, then it would seem, in principle, the therapy is justified. If a person had a gene for homosexuality—to use one of Savalescu’s examples—then intervention to remove that gene would be justified if, and only if, homosexuality is regarded as a disability, and not as a way of being normal. And so on with the other cases.
So it seems that gene therapy would not be justified in order to enhance intelligence or vital statistics, unless one were able to argue, and argue successfully, that without the therapy the person would be suffering from poor health, limited functioning, disability. Evidently such arguments would be successful in certain cases. Equally evidently, the demand for medical justification would prevent the kind of genetically enhanced utopia Savalescu seems to have in mind.
Let me now present in a different way the argument I have set out. It would be possible to imagine a medical profession that saw itself in an entirely technical light. Doctors would exist solely to do what patients asked them to do. They know how to bring about various effects on the human body, for good or ill, and they would do those things on request. Sometimes this would involve restoring health, and sometimes destroying it. Sometimes saving a diseased limb, sometimes cutting off a healthy one. This kind of medical profession would be the one ready to do Savalescu’s bidding. Perhaps the practice of plastic surgery has been leading the medical profession in this direction, but cases like Body Integrity Disorder show that we are not there yet.
What cases like Body Integrity Disorder show is that medicine is not merely a body of technical knowledge, like plumbing, but a value-laden enterprise. It is necessarily connected with the concept of health, which is a normative concept. Part of the understanding which doctors have to acquire is an understanding of what health is, which is part of an understanding of what is good for people, what is in their interests. Patients certainly have autonomy, notably the right to refuse treatment, but they rely on doctors not only for technical information, but for an evaluation of their options. If the medical profession became a purely technical matter, doctors would become mere technicians. That is not our image of doctors, nor theirs of themselves. It would be a degrading change. As things stand, doctors are answerable to their own professional evaluations; this means they must have the right to refuse to carry out inappropriate treatment.
Here’s a parallel we in this room should understand. People engaged in academic study are not merely gaining a body of useful technical knowledge; that would not be academic study. We are engaged in an essentially value-laden enterprise, connected with truth and professional judgement. Academic conclusions should have academic justification, which is to say justification in terms of reasoned argument; they cannot be justified by their convenience or money-value. There is something appalling about the idea of an academic who deliberately falsifies his own conclusions, regardless of the reason. Normally we can rely on academics’ sense of their own dignity to prevent this. Academia would be pointless if we did all our studies but didn’t undertake a proper evaluation of the results. We are answerable to our own professional evaluation of the material we are working with. For a serious academic to argue for whatever conclusions those paying him preferred would be a kind of prostitution, and he would immediately cease to be viewed by others as a serious academic. For the whole of academia to go down that road would be the complete degradation of the profession. This is not a Utilitarian argument, but it is nevertheless a consideration Professor Savalescu, as an academic, would ignore at his peril.
Just as the work of academics is essentially value-laden, the central value being truth, or, if you prefer, the exercise of academic judgement, so the work of doctors is essentially value-laden, where the central value is health, or the medical good of the patient. The idea that this might be reducible to the patient’s own preferences would be news to the whole branch of medicine, psychology, whose stock in trade is the changing of patients’ preferences. I have not articulated what the concept of health amounts to; it is enough to point out that there is such a concept, and that it has this role.
Given that there is such a concept, and that doctors make use of it in their evaluations of what treatment is appropriate, it should be clear that it will never be permissible to make serious medical interventions to healthy people. It may be possible to make the strong stronger or the clever cleverer, but that is not what medicine is for. The fact that this would satisfy the preferences, or assumed preferences, of the patient is an insufficient justification; that does nothing to provide the medical justification which is needed for a medical intervention.
This conclusion may seem mysterious. Medicine is governed by certain values internal to itself which prevents it from being as useful to others as it might be. The same is true of academia: academics worthy of the name do not manipulate their conclusions to further even worthy goals of social policy. But this seems less mysterious. For an academic who honestly thought one thing, and said another in public, would be lying, and it is a familiar enough idea that there is a moral constraint against lying. What is the moral constraint at the basis of a doctor’s refusal to make medical interventions other than with a view to restoring health?
I would propose that the answer is that there is a moral constraint here, most familiarly known as a constraint against mutilation. I put it in this cautious way because the cases we have may not look at first glance like cases of mutilation; what I am suggesting is that, properly understood, the constraint behind the limits of medical practice, which is very clear in classic cases of mutilation, is sufficiently broad to cover the cases we are focusing on here. Accordingly I propose to use the word ‘mutiliation’ in a broad sense.
One easy way to express what is wrong with sterilising the mentally disabled is that it is a case of mutilation. The way I have been expressing it is that the medical intervention has no medical justification, which would be justification in terms of restoring the patient to health. My suggestion is that the two ways of putting it are equivalent; they are interdefinable. Medical interventions without medical justifications are mutilations. We may raise the scalpel against, or give potions and drugs to, our fellow human beings only with a view to the cure or prevention of disease of the patient. To do so otherwise is wrong; it is akin to assault, battery, and mutilation. I think the moral intuition here is clear enough; stipulatively, for convenience, I will call the forbidden action mutilation. So the next question will be: is it plausible to characterise genetic enhancement, when lacking a medical justification, as mutilation in my broad sense?
First of all, let me clarify the meaning of mutilation. Normally, mutilation leaves the victim worse off, but this need not be so. Cutting off a healthy limb for no good reason is obviously mutilation. Would it cease to be mutilation if victim was fulfilling the condition necessary to gain a vast sum of money, leaving him overall better off? Of course it would; we would then ask whether the mutilation was worth it, or was morally justified by it. Like the ugly sisters in the un-Disnified version of the Cinderalla story, who cut of parts of their feet in order to get them into the magic slipper, we can see that there is a moral problem with this. This is not the way we should treat our bodies.
Now consider prosthetic limbs. These have been getting better and better. It will not be long before a prosthetic leg will actually be better than the usual healthy natural leg; perhaps this is so already. Let us suppose it is indeed so. Would it be right for a person to allow either or both of his healthy natural legs to be removed, in order to be fitted with souped up prosthetic legs, as we might say, bionic legs? Again, our moral intuitions are against this. By all means, let the unfortunate souls who lose their legs on land mines or in any other way get the best prosthetic limbs money can buy; but it would not be right to cut off a healthy limb to enjoy the benefits of an artificial one.
Our genes are part of our bodies. This is perhaps something we have to learn; it is not obvious, just by looking at us, but it must be so. Given the moral constraint on mutilation, it follows that it would be wrong to remove parts of our DNA to replace them with others, artificial or borrowed, supposed to be preferable, without medical justification. The moral constraint against mutilation is the protection morality gives to our physical integrity; it is the moral implication of the value, the moral importance, of the human body. Too often ethics limits itself to the moral implications of the value of life, or pleasure, but few if any philosophers defend the view that these are the only things of moral importance. So just as the value of life has the implication that we may not kill, without certain limited kinds of justification, so the value of the body has the implication that we cannot invade or disarrange it, without certain limited kinds of justification. The violation of the constraints protecting life is murder; the violation of the constraints protecting the body is mutilation.