H U M A N G E N E THERAPY 2:71-75 (1991) Mary Ann Liebert, Inc., Publishers
Ethical M a n i p u l a t i o n s : A n
Ethical E v a l u a t i o n o f t h e D e b a t e
Surrounding Genetic Engineering
PAUL J.M. VAN TONGEREN
ABSTRACT "Manipulation" per se is not bad. The crucial question in the moral debate about genetic engineering is: When a n d h o w are w e allowed to manipulate? Unfortunately, the moral discussion surrounding this question is itself being manipulated. T h e r e are m o r a l manipulations (by those w h o wish to either reassure or to alarm) a n d there are ethical manipulations (the failed utilitarian calculus a n d the centering ofthe discussion only a r o u n d rules, rights, a n d duties). A different ethical approach is needed: one based o n virtues. T h e duty of ethics is to help us understand the m o r a l possibilities in each situation, i.e., to develop our moral sensibility. In the area of genetic engineering research w e are motivated by a will to k n o w , but at the s a m e time w e fear total self knowledge. W e w a n t to control, to i m p r o v e our world a n d ourselves, but w e recoil at obtaining ultimate perfection. Therefore, w e m u s t value the u n k n o w a b l e , the uncontrollable. O u r everincreasing capacity to m o u l d the world a n d ourselves is m a k i n g it m o r e difficult to develop a sensitivity for w h a t is given a n d cannot be m a d e . It is dangerous for our ethics to a s s u m e the activistic traits of our technology. W e risk losing a fundamental element of w h a t w e are, or ought to be. W e should train ourselves in moral passivity.
OVERVIEW S U M M A R Y
MANIPULATIONS OF T H E M O R A L DEBATE
The pages of this journal have had many discussions on the The meaning ofthe word "manipulation" is not pejorative per ethics of genetic engineering. The author challenges us by se. Referring to its etymology, the word may be understood as maintaining that the way our scientific and political culture "having something in hand" or as "handling." This is what we do forces us to ask ethical questions threatens to condemn us to all the time and why should we not. The crucial moral question reach answers that fall far short of our moral possibilities. in the debate surrounding genetic engineering is: W h e n and how are we allowed to manipulate and when and how are we not? One can genetically manipulate the genetic material, but one can also manipulate the ethical discussion about this technology. The quest for a moral evaluation of genetic manipulation is T H E INTENTION OF THIS PAPER is twofold. First I will give a jeopardized when the quest itself is manipulated. Even though number of examples of what I think are bad manipulations this risk would appear to be obvious, there are many examples of of the moral debate surrounding genetic engineering. In m y the fact that we do just that. In the following I will give some of these examples, divided evaluation of these forms of manipulation another ethical approach will gradually emerge. I will present this approach as an into two categories. The first category I call moral manipulaalternative and more fruitful way of thinking about the moral tions. These manipulations seem to arise from a preconceived problems concerning genetic engineering. Although this paper attitude toward the moral issue at stake. The consequent maniphas been inspired by the debate in The Netherlands and takes its ulation of the debate is such that it easily results in a reinforceexamples from that debate, I have no doubt that the questions ment or confirmation of this attitude. O n the basis of this characterization these moral manipulations may be subdivided raised are also relevant to the situation elsewhere. Katholieke Universiteit Nijmegen, Faculteit Der Wijsbegeerte, Pb. 9108, 6500 Hk Nijmegen, The Netherlands.
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in two categories. The first category concerns the manipulations that are intended to reassure, the second the manipulations intended to cause alarm. Apart from these moral manipulations, there are the manipulations I call ethical manipulations. They are ethical in that they are implicit in the framework ofthe (or of a specific) ethical approach itself.
These are not the only examples of h o w the moral debate is manipulated to reassure people. W e are told that ethical commissions are being installed. There are rules that will restrict scientific research. W e can be confident that moral forces in society will check certain developments that are potentially dangerous. A n d so on.
MORAL MANIPULATIONS
Causing Alarm
Reassurance Many of the methods used to reassure or ease moral concern about genetic engineering are, in m y opinion, examples of a reprehensible form of manipulation. There is, for instance, the fact that the debate frequently focusses solely on the manipulation ofthe human genome. A single element ofthe issue is thus divorced from its larger context. After all, genetic manipulation is only one of the many aspects of genetic technology m a d e possible by genetic research. In reality none of these elements exists independently. Doing genetic research does not necessarily imply the manipulation of human genes, but as it opens up more and more new possibilities, genetic research cannot be detached from those possibilities. Possibilities tend to find their way to realization, however secretly this m a y happen. O f these possibilities manipulation is but one. Genetic screening, for instance, is another possibility and one that is m u c h more easily put into practice. Greater knowledge of the h u m a n genome makes the development and application of genetic tests more and more likely. Like all tests, genetic testing will discriminate between those w h o are fit and those w h o are unfit. The definition of fit and unfit remains central to the process. Fit to do what? T o perform certain duties, to obtain certain positions, to produce children, to take out an insurance (or some specific insurance package), or even to live. A m p l e moral questions! Abstracting from all this and limiting the debate to manipulative intervention in the genetic material of h u m a n beings is a manipulation ofthe moral debate. Hence, I prefer to talk about genetic technology in the following rather than using the terms "engineering" or "manipulation. Another form of manipulation intended to reassure is the remark that the moral concern about genetic technology relates more to newspaper fantasies or similar ghost stories, than that it is based on the true state of affairs in scientific genetic research and genetic technology. In reality, it is said, w e are far from creating the perfect artifical m a n that is envisaged in these stories. It will be long—they say it might well take another 20 years—before w e can perform genetic intervention in the human germ line cell in a scientifically sound way. And, they add, radical eugenics will never be possible scientifically. Well, anyone w h o knows something about the development of science will understand that such statements are very precarious. The relatively little that is possible at the m o m e n t can never be justified on the basis of separating it from what is not yet possible. Besides, even the transparent science fiction produced in this field is not without some significance. These fantasies have a great tradition and are found in many cultures. W e cannot just dismiss them. The fact that the present state of affairs in science brings them to mind, or stirs our imagination to reiterate them, must mean this science is in some w a y related to what is expressed by them.
A n important manipulation of the moral debate about genetic technology lies in the suggestion, sometimes explicitly presented as a thesis, that recent developments in science have placed us in a radically n e w situation. It is said that a growing practice of genetic testing and intervention will jeopardize the equality of m a n in an unprecedented way. The m o m e n t companies and institutions start subjecting their prospective staff to genetic testing, it is said, a distinction will be created between ordinary people (or the healthy, the fittest) and those w h o because of their greater risk will no longer be able to obtain a position. The increasing possibility to prevent or cure all kinds of diseases and defects by intervention in the genetic material will give rise to a further stigmatization of the remaining disabled. But most important, genetic intervention on the basis of defect diagnosis will inevitably lead to a form of eugenics. A n d since the cost of such testing and therapy will be prohibitive to some, the division between the haves and the have-nots will be genetically reinforced and fixed. I do not want to deny that these are indeed serious problems. W h a t I would question, though, is their radically distinctive nature. Is the difference between the practices of genetic testing, which is so feared, and the already c o m m o n psychological and health examinations indeed as crucial as some would have us to believe? I a m not saying that they are identical. I suspect, however, that the difference might only be a difference of degree. O n e of the reasons I think this difference is not crucial is that the problems w e are faced with m a y essentially be dealt with by taking the kind of measures w e are already familiar with. The therapeutic and diagnostic application ofthe developed technology m a y for instance be bound to various rules. It m a y be linked to income policy or to a greater public or state influence, and so on. It is said that the increasing practice of genetic screening will also endanger the freedom of h u m a n beings in an unprecedented way. More and more people will be forced to subject themselves to such testing. Be it only because they will otherwise not be considered for a certain position, for a certain medical insurance, etc.. But again, the question is whether this constitutes a fundamental change from the present situation. It m a y certainly be true that a genetic test will reveal more about a person than a list of questions. And, apart from the person that is actually being tested, genetic testing m a y also provide information about other people. However, this difference m a y still prove to be only a difference of degree. The same applies to prenatal screening. It has its roots in various tests that are already quite commonly used. The ultrasound scan, for instance, seems to have become c o m m o n practice during most pregnancies. Finally, the continuing debate about compulsory vaccination seems to suggest that w e are actually prepared to curtail the individual freedom of human beings. In m y opinion these arguments are also manipulations of the moral debate. Instead of doing the moral dimension fully justice.
ETHICAL MANIPULATIONS they shape or rather bend it according to a preconceived standpoint—in this case a standpoint of condemnation. It would again be possible to give more examples of this form of manipulation. Take, for instance, the representation of genetic research as some kind of an evil force. Or its interpretation—by means of mythology and wild analysis—as a symptom of a masculinist anal fixation motivated by w o m b envy, or something of the kind . (in such interpretations the details are of minor importance). But I leave it at that and proceed with a category of manipulations rather less visible and therefore possibly harder to recognize.
ETHICAL MANIPULATIONS The manipulations ofthe moral debate I have discussed so seem to be more a result of political affiliations than of devotion to a set of moral values. However, the methods of respectable ethics themselves also contain some dangerous manipulations. In the following sections two examples of these ethical manipulations in the narrower sense of the word will be discussed.
The utilitarian calculus
73 as a whole, or to the state budget? And for what will it be beneficial: for the sustaining of life, or the quality of life, or for the satisfaction of needs? And, finally, who is going to decide this: those concerned, ruling opinion, or an organizing apparatus? Second, our moral experience will not comply with the result of nothing more than a calculation. Even he who has actually done the calculation, may, in retrospect, after being faced with the result, still be wondering whether it really offers a justification for his acts. The fact that the pros and cons cancel each other out does not mean that they will no longer exist as pros and cons. A calculation, however rational it may be, is not going to determine our motives, neither is it going to salve our conscience. W e could compare the gap between utilitarian calculation on the one hand and our moral beliefs on the other with the futile attempt of someone who is in love, trying to far calculate the love of his sweetheart by removing the petals of a flower, one after the other: "She loves me, she loves m e not.' A s soon as the final and deciding petal has been removed, his doubts return to him as strong as they were before. The only way to solve this problem is conforming the evidence to the situation. W h e n the final petal does not bring the doubtful lover the answer he hoped for, he removes that one too. Doing so he gets the "right" answer. But this is a true example of manipulation. A n ethical calculus will not be convincing as long as w e are not prepared to subject ourselves to such manipulation, as long as we refuse to let an ethical theorem bend our moral experience.
In many ethical discussions on genetic technology, we are warned against hasty decision-making and therefore that w e should seek to develop a well-defined set of criteria and rules to which genetic research and its applications should be bound. It General rules, rights, and duties suggests, and at times it is explicitly stated, that it is possible to weigh up the risks and benefits like a calculation, and that a clear But is there a better system to determine rules that distinguish answer will emerge from such a calculation. However calculat- between what is permissible and what is not, than this one which ing, and the quantifying it requires, are ways of controlling and seeks to extract these rules from the calculation of risks and bending; that is of manipulating. But, one may ask, what is benefits? Maybe there is not. Fortunately it is not the responsiwrong with this kind of manipulation? bility of ethics to formulate such rules. The formulation of rules The principal objection to it is that it will not be able to render is the job of jurists or legislators. In this they will be guided by the desired outcome. And this is proved by the fact that it has not experts in the particular field that is to be regulated and also by done so as yet. One has not been able to do the calculation. And the moral consciousness of the community for which the rules the discussion is still going on. It is hard to see why this should are made. The ethicist however—and every individual as a be the case were it only a matter of a mathematical equation moral being—should beware of getting involved in a moral involving the weighing of pros and cons. Apparently, one is still debate that exclusively limits itself to rules. There is more to not convinced that the problem has been solved. The question of morality than drawing the line between what is permissible and what is morally right or permissible is still being asked. O n e what is not, between staying on one side ofthe fence or the other. might argue that this is due to the fact that much is still uncertain.Besides the permissible, morality knows the principle of good After all, w e are still unable to assess exactly all the possible and the various degrees in which this principle is realized or consequences of intervention in the hereditary material of lived up to'. Let us elaborate on this. human beings. W e do not know how a society will react to a fall A m o n g other things, rules are intended to protect rights. The in the number of congenital defects. W e do not know how a question who has a right to what is of course not irrelevant, and person's identity will be influenced by the fact that he or she is is a difficult question to answer. Reducing ethics to this kind of measured by certain standards prior to birth, etc. But these and question by forcing it to give an answer to the question what is similar uncertainties could hardly be a problem for the execution permissible and what is not, is in m y opinion, just another of the utilitarian calculus. After all, it is supposed to be example of bad manipulation. For knowing what right we and sophisticated enough to handle the many variables and uncertain others have is not the same as knowing whether it is morally factors. The quality of a possible consequence can be related to sensible to actually claim that right. To give an example from a the chance such a consequence will occur, in order to get a different, but related area. It is conceivable that a sperm donor, processable quantity. A n d yet, all this calculating has not whose identity for some reason has been unveiled, has a right to brought the desired solution. The reason for this is twofold. For see or visit the child that is conceived by his sperm but born into one, we do not know how to identify and measure the benefits another relationship. But whether it is morally sensible to claim and risks. W e still have to identify to w h o m it will be beneficial: that right is quite a different matter. I believe that how we use our to individuals in general, or to those presently living, to a society rights is of much greater moral significance.
74 Undoubtedly one will ask what I mean by "moral sense." And, in particular, w h o is going to decide what is the sensible thing to do in a certain situation? M y answer would be: moral sense is the ability to do justice to the moral possibilities and aspects that are inherent in a given situation. The moral aspects of a situation and the different possibilities of relating to it cannot be expressed in terms of rights and duties alone. It is also through successful examples, through what classical tradition calls virtues, that they must be shown. Knowing what rights one (i.e., each of us) has is one thing. Being able to recognize what, in a certain situation, is courageous, sensible, moderate, fair, considerate, honourable, or otherwise virtuous, even if only few are able to realize it, is another. What is the sensible thing for one to do in a certain situation cannot be decided by someone else, let alone in general. That is not to say that whatever a person involved in such a situation decides for himself is necessarily in itself sensible. Ethics has indeed something to say in this matter. A n d it can claim a certain degree of universality in doing so. Perhaps the reader still has some doubts as to the proposition that ethics should not primarily focus on the formulating and founding of general rules. O n e m a y argue that this so-called moral sense will also at least be bound by some basic moral principles. The primary responsibility of ethics should then surely be to formulate, found, and implement these principles for us. There are indeed basic ethical principles. Or perhaps there is only one, that which forbids the reduction of h u m a n beings to instruments. T o put it in positive terms, the principle that orders the respect of human autonomy. It is the principle most convincingly founded by Immanuel Kant. I do however doubt whether it gets us anywhere. O f course, it is possible to think of practices that evidently violate this principle. W h e n human beings are going to be used as materials, or in the way biochemists, psychologists and others n o w use mice, w e evidently go too far. A n d deciding human life in the name of other people's or c o m m o n interest is just not done. But that is all quite obvious. Unfortunately that does not mean that the principle is never violated. W e have to keep reminding both individuals and society of its importance. Our situation would however be a distressing one if that were the sole responsibility of ethicists. It would also be pointless to say that ethicists should prove this principle for those w h o doubt it. Because even on this very fundamental point there is nothing to be proved. A n d what seems to be more important: but for the fact it defines the absolute limit this principle does not yield the desired rules. It does not answer the question of what human being are, that is to say: when w e should speak of human life. Neither does it make clear when human beings are being reduced to instruments. The so-called free consent of human beings is neither a sufficient nor a necessary condition for justification vis-a-vis this principle. S o m e m a y not be able to consent and the free consent itself m a y be manipulated. Besides, the human autonomy w e are required to respect is not an absolute individual sovereignty. N o one has created himself. W h y then should influencing and shaping future generations by intervening in the genome of h u m a n beings living n o w constitute a violation ofthe autonomy of those still to come? Questions like these demand another approach, different from the one discussed so far. The last section of this paper will give an indication of that different approach.
VAN TONGEREN SHAPING M O R A L SENSIBILITY I would define the duty of ethics—including its responsibility in dealing with the problems of genetic technology—as follows: It should try to nourish our ability to understand moral possibilities, that is our moral sensibility or sense; it should enrich it with what threatens to be obscured by our manipulations, ethical or otherwise. It m a y prove useful to illustrate this with some examples. A first example lies in the question of the value of diversity and surprise. A n abstract evaluation of the value of surprise on the one hand and the desire for health and a healthy offspring on the other, is of course out of the question. N o one wants to be surprised by disaster. That does however not necessarily mean that w e must always choose security and safety. W e are afraid of a world devoured by diseases, but w e also shrink back from the fantasy of a world that is no longer subject to uncontrollable circumstances, whether positive or negative. There m a y be a middle course in this, too. That is to say, a place of virtue, or the moral optimum. The second example I would like to give requires some further elaboration. Manipulations, it was said, are ways of handling and controlling a certain matter. In order to do so, w e simplify. Contrary to this simplification, ethics must try to complicate the matter. This complication begins with laying bare hidden ambiguities. In this last section, I would like to look at some of these apparent fundamental ambiguities in ourselves. Genetic research is, a m o n g other things, motivated by our will to know, our curiosity. Wherever w e suspect something as yet undiscovered, w e will do our utmost to find it. It is inconceivable that h u m a n beings would ever stop searching. W e will never be really satisfied with what w e already know. The as yet unknown will keep challenging us. Knowing the what will not do, w e also want to k n o w the why. W e are not satisfied with mere descriptive knowledge. W e also, and in particular, want explicative knowledge, and through this, if possible, predictive knowledge. W e want to have this knowledge about everything, and, above all, about ourselves. O n the other hand, however, there is a wish for not knowing. There are several examples of scientists and philosophers bearing witness to the fact that they were fascinated, but at the same time overcome with fear when they were about to make their discoveries. O n an altogether different level w e see the same thing happen among those w h o consult fortune-tellers. They want to hear all about their destiny, but at the same time there are certain things they would rather not know. In a documentary on genetic technology, broadcast on Dutch television, the interviews with scientists telling about their genetic research w e interspersed with endlessly repeated images of ordinary people just walking or standing in the street. A s I understand it, the idea behind these striking intermezzi was to suggest that in the foreseeable future everybody's destiny could in principle be known in advance. It m a d e those images ominous and chilling. O n the one hand, w e want to k n o w all, including and in particular about ourselves. Each accumulation of knowledge is a further affirmation of ourselves. O n the other hand w e are afraid of total self-knowledge, of becoming entirely transparent to ourselves and others, because this would entail the loss of ourselves.
ETHICAL MANIPULATIONS The same ambiguity can be shown in another way. Genetic research and certainly genetic technology is also motivated by a desire to control and intervene. I will leave aside the various possible dishonourable and dubious motives for this intervention. Let us assume, for the moment, that it is exclusively aimed at real improvement, or rather at a reduction of what everyone would feel to be bad, unsuccessful, or less successful. Whatever w e m a y improve, w e will improve. Whether serious diseases or just minor defects, whoever m a y prevent them, will do so. W e see it as our duty to improve what w e are able to improve. In performing that duty w e affirm ourselves. Yet at the same time, w e feel a desire that is opposite to this desire for control and improvement. For when w e extrapolate from our improving interventions and imagine the possibility of ultimate perfection, w e recoil. O f course it is only in our imagination that w e have control of this ultimate perfection. However, the moral interpretation of such a fantasy does have a bearing on the real world. Literature gives many examples of images of artificial m a n that at the same time express our horror of such artefacts of our o w n making. There always seems to be a curse on both the maker and his product. A n d what is true for artificial m a n , is also true for the self-created perfection of ourselves. It seems that our will to improve feeds itself on a context of improvability,' that is a context of imperfection. W e shrink from an intervention so successful that nothing will ever again challenge us to intervene. W e get an impression of such a situation in our imagination, when w e carry the potential of genetic technology to its extreme. It fills us with dread. W e do have a will to improve, it is true, but w e also want to retain the ongoing ability to improve as a will. This last formulation gives rise to yet another way of considering the same paradox. Not only do w e have the will to shape all sorts of things, w e also want to form the will itself. W h a t w e do in the upbringing of young people amounts to little more than a molding of their desires. That is also true for ourselves. W e want to shape and form our o w n will as well. W e want to get rid of our will to smoke; w e wish w e would have the will to do this rather than the will to do that, etc. M a n y theories of morality m a y in fact be interpreted as a training of the will. Ascetic practices, for instance, are aimed at detachment, i.e., at a situation in which the will no longer wills. At the same time w e are apprehensive about possible genetic intervention that could change the hereditary tendency to a certain kind of behavior. O n a subjective level, this tendency translates as an inclination to this behavior. O n a subjective level, this tendency translates as an inclination to this behavior, as the will to do this rather than that. W e shudder at the fantasy of a pill or a treatment that would take away our will to do the things w e n o w want to do, or change it so w e would only want the things w e would like to want. W e do want to change our will, but w e also want to be resisted when trying to change it. W h a t would remain of the heroism of the stoic moralist, when he would no longer be able to feed on the desire he has overcome! The m o m e n t w e are able to make our will the way w e want it to be, w e will lose something w e do not want to lose. W e are afraid of controlling and manipulating ourselves to such as extent w e would lose ourselves in the process.
75 Well then, if this evocation of our ambiguities has to some extent succeeded in showing that they are indeed typical of contemporary man, it will also be important to k n o w what this implies for our moral condition. If w e fear to lose ourselves in the loss of our not-knowing and not-being able to, the unknowable and the uncontrollable must be of value to us. Which would imply that w e should define the appropiate, the respectable, the right attitude to that value. What other attitude can it be, than an attitude of respect and deference, and in its ultimate form an attitude of gratitude? (I mention gratitude as the ultimate form of this attitude because it is opposed to resignation. The latter still implies resistance, be it a resistance that is given up.) What I a m suggesting is that our ever-increasing capacity to mold the world, including ourselves, is making it more and more difficult to develop a sensibility for what is given, and cannot be made. Genetic technology is only one phase in this development, be it an important one. Because w e are increasingly able to do things, w e more and more focus on our ability. W e think of the impossible as the not yet possible. I think it is dangerous to let our ethics assume the activistic traits of our technology, or to let our growing potential for improving activity undermine our capacity for adequate passivity. O n e m a y well wonder what good all this is for our moral questions concerning genetic technology. The points raised all remain quite vague and general. What use is a reflection on the value of diversity if w e ask whether w e m a y apply genetic technology to prevent a certain disease? What use a consideration of the value of a certain passivity if w e want to k n o w if w e are allowed to do what w e already can? It is true, as far as our actual questions are concerned, this is all rather irrelevant. But, as I have said before, ethics cannot come up to such expectations. Neither can it answer such questions. But is the fact that they are not being answered partly because they are as activistic as the practices they arise from? It cannot be denied that these questions need to be answered as well. There are matters that need to be settled, and the notion of passivity is not an aid in this pursuit. A s soon as w e are able to do something, the question what w e may or must do is inevitable. It has only been m y desire to express m y suspicion that the manner in which w e ask questions, and the w a y in which w e allow a scientific and political culture to force us to ask them, threatens to condemn us to answers that fall extremely short of our moral possibilities. I have wanted to make clear that limiting ourselves to what w e can do will ultimately result in losing a fundamental element of what w e are, or ought to be. Finally, I suspect that our questions would look different if w e would train ourselves more in moral passivity. Address reprint requests to: Dr. P van Tongeren Katholieke Universiteit Nijmegen Faculteit Der Wijsbegeerte Thomas v. Aquinostr. 3 Ph. 9108 6500 H k Nijmegen The Netherlands
Received for publication December 3, 1990; accepted after revision January 28, 1991.
Ethical M a n i p u l a t i o n s : A n
Ethical E v a l u a t i o n o f t h e D e b a t e
Surrounding Genetic Engineering
PAUL J.M. VAN TONGEREN
ABSTRACT "Manipulation" per se is not bad. The crucial question in the moral debate about genetic engineering is: When a n d h o w are w e allowed to manipulate? Unfortunately, the moral discussion surrounding this question is itself being manipulated. T h e r e are m o r a l manipulations (by those w h o wish to either reassure or to alarm) a n d there are ethical manipulations (the failed utilitarian calculus a n d the centering ofthe discussion only a r o u n d rules, rights, a n d duties). A different ethical approach is needed: one based o n virtues. T h e duty of ethics is to help us understand the m o r a l possibilities in each situation, i.e., to develop our moral sensibility. In the area of genetic engineering research w e are motivated by a will to k n o w , but at the s a m e time w e fear total self knowledge. W e w a n t to control, to i m p r o v e our world a n d ourselves, but w e recoil at obtaining ultimate perfection. Therefore, w e m u s t value the u n k n o w a b l e , the uncontrollable. O u r everincreasing capacity to m o u l d the world a n d ourselves is m a k i n g it m o r e difficult to develop a sensitivity for w h a t is given a n d cannot be m a d e . It is dangerous for our ethics to a s s u m e the activistic traits of our technology. W e risk losing a fundamental element of w h a t w e are, or ought to be. W e should train ourselves in moral passivity.
OVERVIEW S U M M A R Y
MANIPULATIONS OF T H E M O R A L DEBATE
The pages of this journal have had many discussions on the The meaning ofthe word "manipulation" is not pejorative per ethics of genetic engineering. The author challenges us by se. Referring to its etymology, the word may be understood as maintaining that the way our scientific and political culture "having something in hand" or as "handling." This is what we do forces us to ask ethical questions threatens to condemn us to all the time and why should we not. The crucial moral question reach answers that fall far short of our moral possibilities. in the debate surrounding genetic engineering is: W h e n and how are we allowed to manipulate and when and how are we not? One can genetically manipulate the genetic material, but one can also manipulate the ethical discussion about this technology. The quest for a moral evaluation of genetic manipulation is T H E INTENTION OF THIS PAPER is twofold. First I will give a jeopardized when the quest itself is manipulated. Even though number of examples of what I think are bad manipulations this risk would appear to be obvious, there are many examples of of the moral debate surrounding genetic engineering. In m y the fact that we do just that. In the following I will give some of these examples, divided evaluation of these forms of manipulation another ethical approach will gradually emerge. I will present this approach as an into two categories. The first category I call moral manipulaalternative and more fruitful way of thinking about the moral tions. These manipulations seem to arise from a preconceived problems concerning genetic engineering. Although this paper attitude toward the moral issue at stake. The consequent maniphas been inspired by the debate in The Netherlands and takes its ulation of the debate is such that it easily results in a reinforceexamples from that debate, I have no doubt that the questions ment or confirmation of this attitude. O n the basis of this characterization these moral manipulations may be subdivided raised are also relevant to the situation elsewhere. Katholieke Universiteit Nijmegen, Faculteit Der Wijsbegeerte, Pb. 9108, 6500 Hk Nijmegen, The Netherlands.
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in two categories. The first category concerns the manipulations that are intended to reassure, the second the manipulations intended to cause alarm. Apart from these moral manipulations, there are the manipulations I call ethical manipulations. They are ethical in that they are implicit in the framework ofthe (or of a specific) ethical approach itself.
These are not the only examples of h o w the moral debate is manipulated to reassure people. W e are told that ethical commissions are being installed. There are rules that will restrict scientific research. W e can be confident that moral forces in society will check certain developments that are potentially dangerous. A n d so on.
MORAL MANIPULATIONS
Causing Alarm
Reassurance Many of the methods used to reassure or ease moral concern about genetic engineering are, in m y opinion, examples of a reprehensible form of manipulation. There is, for instance, the fact that the debate frequently focusses solely on the manipulation ofthe human genome. A single element ofthe issue is thus divorced from its larger context. After all, genetic manipulation is only one of the many aspects of genetic technology m a d e possible by genetic research. In reality none of these elements exists independently. Doing genetic research does not necessarily imply the manipulation of human genes, but as it opens up more and more new possibilities, genetic research cannot be detached from those possibilities. Possibilities tend to find their way to realization, however secretly this m a y happen. O f these possibilities manipulation is but one. Genetic screening, for instance, is another possibility and one that is m u c h more easily put into practice. Greater knowledge of the h u m a n genome makes the development and application of genetic tests more and more likely. Like all tests, genetic testing will discriminate between those w h o are fit and those w h o are unfit. The definition of fit and unfit remains central to the process. Fit to do what? T o perform certain duties, to obtain certain positions, to produce children, to take out an insurance (or some specific insurance package), or even to live. A m p l e moral questions! Abstracting from all this and limiting the debate to manipulative intervention in the genetic material of h u m a n beings is a manipulation ofthe moral debate. Hence, I prefer to talk about genetic technology in the following rather than using the terms "engineering" or "manipulation. Another form of manipulation intended to reassure is the remark that the moral concern about genetic technology relates more to newspaper fantasies or similar ghost stories, than that it is based on the true state of affairs in scientific genetic research and genetic technology. In reality, it is said, w e are far from creating the perfect artifical m a n that is envisaged in these stories. It will be long—they say it might well take another 20 years—before w e can perform genetic intervention in the human germ line cell in a scientifically sound way. And, they add, radical eugenics will never be possible scientifically. Well, anyone w h o knows something about the development of science will understand that such statements are very precarious. The relatively little that is possible at the m o m e n t can never be justified on the basis of separating it from what is not yet possible. Besides, even the transparent science fiction produced in this field is not without some significance. These fantasies have a great tradition and are found in many cultures. W e cannot just dismiss them. The fact that the present state of affairs in science brings them to mind, or stirs our imagination to reiterate them, must mean this science is in some w a y related to what is expressed by them.
A n important manipulation of the moral debate about genetic technology lies in the suggestion, sometimes explicitly presented as a thesis, that recent developments in science have placed us in a radically n e w situation. It is said that a growing practice of genetic testing and intervention will jeopardize the equality of m a n in an unprecedented way. The m o m e n t companies and institutions start subjecting their prospective staff to genetic testing, it is said, a distinction will be created between ordinary people (or the healthy, the fittest) and those w h o because of their greater risk will no longer be able to obtain a position. The increasing possibility to prevent or cure all kinds of diseases and defects by intervention in the genetic material will give rise to a further stigmatization of the remaining disabled. But most important, genetic intervention on the basis of defect diagnosis will inevitably lead to a form of eugenics. A n d since the cost of such testing and therapy will be prohibitive to some, the division between the haves and the have-nots will be genetically reinforced and fixed. I do not want to deny that these are indeed serious problems. W h a t I would question, though, is their radically distinctive nature. Is the difference between the practices of genetic testing, which is so feared, and the already c o m m o n psychological and health examinations indeed as crucial as some would have us to believe? I a m not saying that they are identical. I suspect, however, that the difference might only be a difference of degree. O n e of the reasons I think this difference is not crucial is that the problems w e are faced with m a y essentially be dealt with by taking the kind of measures w e are already familiar with. The therapeutic and diagnostic application ofthe developed technology m a y for instance be bound to various rules. It m a y be linked to income policy or to a greater public or state influence, and so on. It is said that the increasing practice of genetic screening will also endanger the freedom of h u m a n beings in an unprecedented way. More and more people will be forced to subject themselves to such testing. Be it only because they will otherwise not be considered for a certain position, for a certain medical insurance, etc.. But again, the question is whether this constitutes a fundamental change from the present situation. It m a y certainly be true that a genetic test will reveal more about a person than a list of questions. And, apart from the person that is actually being tested, genetic testing m a y also provide information about other people. However, this difference m a y still prove to be only a difference of degree. The same applies to prenatal screening. It has its roots in various tests that are already quite commonly used. The ultrasound scan, for instance, seems to have become c o m m o n practice during most pregnancies. Finally, the continuing debate about compulsory vaccination seems to suggest that w e are actually prepared to curtail the individual freedom of human beings. In m y opinion these arguments are also manipulations of the moral debate. Instead of doing the moral dimension fully justice.
ETHICAL MANIPULATIONS they shape or rather bend it according to a preconceived standpoint—in this case a standpoint of condemnation. It would again be possible to give more examples of this form of manipulation. Take, for instance, the representation of genetic research as some kind of an evil force. Or its interpretation—by means of mythology and wild analysis—as a symptom of a masculinist anal fixation motivated by w o m b envy, or something of the kind . (in such interpretations the details are of minor importance). But I leave it at that and proceed with a category of manipulations rather less visible and therefore possibly harder to recognize.
ETHICAL MANIPULATIONS The manipulations ofthe moral debate I have discussed so seem to be more a result of political affiliations than of devotion to a set of moral values. However, the methods of respectable ethics themselves also contain some dangerous manipulations. In the following sections two examples of these ethical manipulations in the narrower sense of the word will be discussed.
The utilitarian calculus
73 as a whole, or to the state budget? And for what will it be beneficial: for the sustaining of life, or the quality of life, or for the satisfaction of needs? And, finally, who is going to decide this: those concerned, ruling opinion, or an organizing apparatus? Second, our moral experience will not comply with the result of nothing more than a calculation. Even he who has actually done the calculation, may, in retrospect, after being faced with the result, still be wondering whether it really offers a justification for his acts. The fact that the pros and cons cancel each other out does not mean that they will no longer exist as pros and cons. A calculation, however rational it may be, is not going to determine our motives, neither is it going to salve our conscience. W e could compare the gap between utilitarian calculation on the one hand and our moral beliefs on the other with the futile attempt of someone who is in love, trying to far calculate the love of his sweetheart by removing the petals of a flower, one after the other: "She loves me, she loves m e not.' A s soon as the final and deciding petal has been removed, his doubts return to him as strong as they were before. The only way to solve this problem is conforming the evidence to the situation. W h e n the final petal does not bring the doubtful lover the answer he hoped for, he removes that one too. Doing so he gets the "right" answer. But this is a true example of manipulation. A n ethical calculus will not be convincing as long as w e are not prepared to subject ourselves to such manipulation, as long as we refuse to let an ethical theorem bend our moral experience.
In many ethical discussions on genetic technology, we are warned against hasty decision-making and therefore that w e should seek to develop a well-defined set of criteria and rules to which genetic research and its applications should be bound. It General rules, rights, and duties suggests, and at times it is explicitly stated, that it is possible to weigh up the risks and benefits like a calculation, and that a clear But is there a better system to determine rules that distinguish answer will emerge from such a calculation. However calculat- between what is permissible and what is not, than this one which ing, and the quantifying it requires, are ways of controlling and seeks to extract these rules from the calculation of risks and bending; that is of manipulating. But, one may ask, what is benefits? Maybe there is not. Fortunately it is not the responsiwrong with this kind of manipulation? bility of ethics to formulate such rules. The formulation of rules The principal objection to it is that it will not be able to render is the job of jurists or legislators. In this they will be guided by the desired outcome. And this is proved by the fact that it has not experts in the particular field that is to be regulated and also by done so as yet. One has not been able to do the calculation. And the moral consciousness of the community for which the rules the discussion is still going on. It is hard to see why this should are made. The ethicist however—and every individual as a be the case were it only a matter of a mathematical equation moral being—should beware of getting involved in a moral involving the weighing of pros and cons. Apparently, one is still debate that exclusively limits itself to rules. There is more to not convinced that the problem has been solved. The question of morality than drawing the line between what is permissible and what is morally right or permissible is still being asked. O n e what is not, between staying on one side ofthe fence or the other. might argue that this is due to the fact that much is still uncertain.Besides the permissible, morality knows the principle of good After all, w e are still unable to assess exactly all the possible and the various degrees in which this principle is realized or consequences of intervention in the hereditary material of lived up to'. Let us elaborate on this. human beings. W e do not know how a society will react to a fall A m o n g other things, rules are intended to protect rights. The in the number of congenital defects. W e do not know how a question who has a right to what is of course not irrelevant, and person's identity will be influenced by the fact that he or she is is a difficult question to answer. Reducing ethics to this kind of measured by certain standards prior to birth, etc. But these and question by forcing it to give an answer to the question what is similar uncertainties could hardly be a problem for the execution permissible and what is not, is in m y opinion, just another of the utilitarian calculus. After all, it is supposed to be example of bad manipulation. For knowing what right we and sophisticated enough to handle the many variables and uncertain others have is not the same as knowing whether it is morally factors. The quality of a possible consequence can be related to sensible to actually claim that right. To give an example from a the chance such a consequence will occur, in order to get a different, but related area. It is conceivable that a sperm donor, processable quantity. A n d yet, all this calculating has not whose identity for some reason has been unveiled, has a right to brought the desired solution. The reason for this is twofold. For see or visit the child that is conceived by his sperm but born into one, we do not know how to identify and measure the benefits another relationship. But whether it is morally sensible to claim and risks. W e still have to identify to w h o m it will be beneficial: that right is quite a different matter. I believe that how we use our to individuals in general, or to those presently living, to a society rights is of much greater moral significance.
74 Undoubtedly one will ask what I mean by "moral sense." And, in particular, w h o is going to decide what is the sensible thing to do in a certain situation? M y answer would be: moral sense is the ability to do justice to the moral possibilities and aspects that are inherent in a given situation. The moral aspects of a situation and the different possibilities of relating to it cannot be expressed in terms of rights and duties alone. It is also through successful examples, through what classical tradition calls virtues, that they must be shown. Knowing what rights one (i.e., each of us) has is one thing. Being able to recognize what, in a certain situation, is courageous, sensible, moderate, fair, considerate, honourable, or otherwise virtuous, even if only few are able to realize it, is another. What is the sensible thing for one to do in a certain situation cannot be decided by someone else, let alone in general. That is not to say that whatever a person involved in such a situation decides for himself is necessarily in itself sensible. Ethics has indeed something to say in this matter. A n d it can claim a certain degree of universality in doing so. Perhaps the reader still has some doubts as to the proposition that ethics should not primarily focus on the formulating and founding of general rules. O n e m a y argue that this so-called moral sense will also at least be bound by some basic moral principles. The primary responsibility of ethics should then surely be to formulate, found, and implement these principles for us. There are indeed basic ethical principles. Or perhaps there is only one, that which forbids the reduction of h u m a n beings to instruments. T o put it in positive terms, the principle that orders the respect of human autonomy. It is the principle most convincingly founded by Immanuel Kant. I do however doubt whether it gets us anywhere. O f course, it is possible to think of practices that evidently violate this principle. W h e n human beings are going to be used as materials, or in the way biochemists, psychologists and others n o w use mice, w e evidently go too far. A n d deciding human life in the name of other people's or c o m m o n interest is just not done. But that is all quite obvious. Unfortunately that does not mean that the principle is never violated. W e have to keep reminding both individuals and society of its importance. Our situation would however be a distressing one if that were the sole responsibility of ethicists. It would also be pointless to say that ethicists should prove this principle for those w h o doubt it. Because even on this very fundamental point there is nothing to be proved. A n d what seems to be more important: but for the fact it defines the absolute limit this principle does not yield the desired rules. It does not answer the question of what human being are, that is to say: when w e should speak of human life. Neither does it make clear when human beings are being reduced to instruments. The so-called free consent of human beings is neither a sufficient nor a necessary condition for justification vis-a-vis this principle. S o m e m a y not be able to consent and the free consent itself m a y be manipulated. Besides, the human autonomy w e are required to respect is not an absolute individual sovereignty. N o one has created himself. W h y then should influencing and shaping future generations by intervening in the genome of h u m a n beings living n o w constitute a violation ofthe autonomy of those still to come? Questions like these demand another approach, different from the one discussed so far. The last section of this paper will give an indication of that different approach.
VAN TONGEREN SHAPING M O R A L SENSIBILITY I would define the duty of ethics—including its responsibility in dealing with the problems of genetic technology—as follows: It should try to nourish our ability to understand moral possibilities, that is our moral sensibility or sense; it should enrich it with what threatens to be obscured by our manipulations, ethical or otherwise. It m a y prove useful to illustrate this with some examples. A first example lies in the question of the value of diversity and surprise. A n abstract evaluation of the value of surprise on the one hand and the desire for health and a healthy offspring on the other, is of course out of the question. N o one wants to be surprised by disaster. That does however not necessarily mean that w e must always choose security and safety. W e are afraid of a world devoured by diseases, but w e also shrink back from the fantasy of a world that is no longer subject to uncontrollable circumstances, whether positive or negative. There m a y be a middle course in this, too. That is to say, a place of virtue, or the moral optimum. The second example I would like to give requires some further elaboration. Manipulations, it was said, are ways of handling and controlling a certain matter. In order to do so, w e simplify. Contrary to this simplification, ethics must try to complicate the matter. This complication begins with laying bare hidden ambiguities. In this last section, I would like to look at some of these apparent fundamental ambiguities in ourselves. Genetic research is, a m o n g other things, motivated by our will to know, our curiosity. Wherever w e suspect something as yet undiscovered, w e will do our utmost to find it. It is inconceivable that h u m a n beings would ever stop searching. W e will never be really satisfied with what w e already know. The as yet unknown will keep challenging us. Knowing the what will not do, w e also want to k n o w the why. W e are not satisfied with mere descriptive knowledge. W e also, and in particular, want explicative knowledge, and through this, if possible, predictive knowledge. W e want to have this knowledge about everything, and, above all, about ourselves. O n the other hand, however, there is a wish for not knowing. There are several examples of scientists and philosophers bearing witness to the fact that they were fascinated, but at the same time overcome with fear when they were about to make their discoveries. O n an altogether different level w e see the same thing happen among those w h o consult fortune-tellers. They want to hear all about their destiny, but at the same time there are certain things they would rather not know. In a documentary on genetic technology, broadcast on Dutch television, the interviews with scientists telling about their genetic research w e interspersed with endlessly repeated images of ordinary people just walking or standing in the street. A s I understand it, the idea behind these striking intermezzi was to suggest that in the foreseeable future everybody's destiny could in principle be known in advance. It m a d e those images ominous and chilling. O n the one hand, w e want to k n o w all, including and in particular about ourselves. Each accumulation of knowledge is a further affirmation of ourselves. O n the other hand w e are afraid of total self-knowledge, of becoming entirely transparent to ourselves and others, because this would entail the loss of ourselves.
ETHICAL MANIPULATIONS The same ambiguity can be shown in another way. Genetic research and certainly genetic technology is also motivated by a desire to control and intervene. I will leave aside the various possible dishonourable and dubious motives for this intervention. Let us assume, for the moment, that it is exclusively aimed at real improvement, or rather at a reduction of what everyone would feel to be bad, unsuccessful, or less successful. Whatever w e m a y improve, w e will improve. Whether serious diseases or just minor defects, whoever m a y prevent them, will do so. W e see it as our duty to improve what w e are able to improve. In performing that duty w e affirm ourselves. Yet at the same time, w e feel a desire that is opposite to this desire for control and improvement. For when w e extrapolate from our improving interventions and imagine the possibility of ultimate perfection, w e recoil. O f course it is only in our imagination that w e have control of this ultimate perfection. However, the moral interpretation of such a fantasy does have a bearing on the real world. Literature gives many examples of images of artificial m a n that at the same time express our horror of such artefacts of our o w n making. There always seems to be a curse on both the maker and his product. A n d what is true for artificial m a n , is also true for the self-created perfection of ourselves. It seems that our will to improve feeds itself on a context of improvability,' that is a context of imperfection. W e shrink from an intervention so successful that nothing will ever again challenge us to intervene. W e get an impression of such a situation in our imagination, when w e carry the potential of genetic technology to its extreme. It fills us with dread. W e do have a will to improve, it is true, but w e also want to retain the ongoing ability to improve as a will. This last formulation gives rise to yet another way of considering the same paradox. Not only do w e have the will to shape all sorts of things, w e also want to form the will itself. W h a t w e do in the upbringing of young people amounts to little more than a molding of their desires. That is also true for ourselves. W e want to shape and form our o w n will as well. W e want to get rid of our will to smoke; w e wish w e would have the will to do this rather than the will to do that, etc. M a n y theories of morality m a y in fact be interpreted as a training of the will. Ascetic practices, for instance, are aimed at detachment, i.e., at a situation in which the will no longer wills. At the same time w e are apprehensive about possible genetic intervention that could change the hereditary tendency to a certain kind of behavior. O n a subjective level, this tendency translates as an inclination to this behavior. O n a subjective level, this tendency translates as an inclination to this behavior, as the will to do this rather than that. W e shudder at the fantasy of a pill or a treatment that would take away our will to do the things w e n o w want to do, or change it so w e would only want the things w e would like to want. W e do want to change our will, but w e also want to be resisted when trying to change it. W h a t would remain of the heroism of the stoic moralist, when he would no longer be able to feed on the desire he has overcome! The m o m e n t w e are able to make our will the way w e want it to be, w e will lose something w e do not want to lose. W e are afraid of controlling and manipulating ourselves to such as extent w e would lose ourselves in the process.
75 Well then, if this evocation of our ambiguities has to some extent succeeded in showing that they are indeed typical of contemporary man, it will also be important to k n o w what this implies for our moral condition. If w e fear to lose ourselves in the loss of our not-knowing and not-being able to, the unknowable and the uncontrollable must be of value to us. Which would imply that w e should define the appropiate, the respectable, the right attitude to that value. What other attitude can it be, than an attitude of respect and deference, and in its ultimate form an attitude of gratitude? (I mention gratitude as the ultimate form of this attitude because it is opposed to resignation. The latter still implies resistance, be it a resistance that is given up.) What I a m suggesting is that our ever-increasing capacity to mold the world, including ourselves, is making it more and more difficult to develop a sensibility for what is given, and cannot be made. Genetic technology is only one phase in this development, be it an important one. Because w e are increasingly able to do things, w e more and more focus on our ability. W e think of the impossible as the not yet possible. I think it is dangerous to let our ethics assume the activistic traits of our technology, or to let our growing potential for improving activity undermine our capacity for adequate passivity. O n e m a y well wonder what good all this is for our moral questions concerning genetic technology. The points raised all remain quite vague and general. What use is a reflection on the value of diversity if w e ask whether w e m a y apply genetic technology to prevent a certain disease? What use a consideration of the value of a certain passivity if w e want to k n o w if w e are allowed to do what w e already can? It is true, as far as our actual questions are concerned, this is all rather irrelevant. But, as I have said before, ethics cannot come up to such expectations. Neither can it answer such questions. But is the fact that they are not being answered partly because they are as activistic as the practices they arise from? It cannot be denied that these questions need to be answered as well. There are matters that need to be settled, and the notion of passivity is not an aid in this pursuit. A s soon as w e are able to do something, the question what w e may or must do is inevitable. It has only been m y desire to express m y suspicion that the manner in which w e ask questions, and the w a y in which w e allow a scientific and political culture to force us to ask them, threatens to condemn us to answers that fall extremely short of our moral possibilities. I have wanted to make clear that limiting ourselves to what w e can do will ultimately result in losing a fundamental element of what w e are, or ought to be. Finally, I suspect that our questions would look different if w e would train ourselves more in moral passivity. Address reprint requests to: Dr. P van Tongeren Katholieke Universiteit Nijmegen Faculteit Der Wijsbegeerte Thomas v. Aquinostr. 3 Ph. 9108 6500 H k Nijmegen The Netherlands
Received for publication December 3, 1990; accepted after revision January 28, 1991.
