H U M A N G E N E T H E R A P Y 1:299-306 (1990) Mary A n n Liebert, Inc., Publishers
G e n e T h e r a p y : W h e r e to D r a w the L i n e
BERNARD HOOSE
ABSTRACT The four classifications of genetic manipulation (somatic cell gene therapy, germ-line gene therapy, enhancement genetic engineering, eugenic genetic engineering) are reviewed from an ethical viewpoint. Immediately, it needs to be recognized that words like "therapy," "enhancement," and "eugenic" already possess an emotional framework, so that careful reasoning is m a d e more difficult. In each ofthe areas of genetic manipulation, it can be argued that circumstances could be imagined that would either justify or not justify proceeding. Based on our present state of knowledge, the line should be drawn at not carrying out gene therapy of any type except in specific cases that are carefully evaluated in advance. With increased knowledge, the line should be moved to embrace appropriate situations.
OVERVIEW S U M M A R Y Ethical debates sometimes flounder on semantic misunderstandings. Hoose critically examines the ethical arguments m a d e for and against the various types of genetic manipulation. H e argues that there are really no definitive permanent conclusions that can be drawn. In the last analysis, our task is to discover what is best for h u m a n s or what is the most h u m a n thing to do.
•• T accept that violence may be employed in certain situations, but I draw the line at torture." Statements Xsuch as this betray that urge, which is extremely c o m m o n amongst humans, to seek the security and apparent simplicity of deontological norms. Decision-making seems to be simplified if one feels that one can safely say that such and such an action would always be wrong regardless of the ends and circumstances that might be involved. Unfortunately for the simplicity seekers, moral decision-making is not quite so simple as that, and even torture requires a more teleological approach. "If I apprehend one of two thugs on their way to execute m y brother or sister (at the time, I a m not sure which one), I would apply a very effective and increasingly painful armlock to find out which, so that I could warn him/her," writes Richard McCormick. H e then asks: "Is that torture?"0} The answer, I would say, must be in the affirmative if w e take the word "torture" to mean "the infliction of severe pain on another person in order to persuade that person to comply with one's wishes." In that case, McCormick-and, one imagines, the vast majority of moral philosophers and theologians—could not claim to draw the line at torture. They would surely say that its use could be justified in certain instances. McCormick, however, points out that" ktorture' in most discourse refers to the type of pain that causes moral revulsion. In other words, in its most frequent usage it is a value term, already containing its o w n condemnation (disproportion) in the context or tone."(2)
Allington Castle, Maidstone, Kent, M E 1 6 O N B , England 299
HOOSE With such a meaning of the word in mind, we could all draw the line at torture, but, in saying that, we would be saying no more than "we draw the line at wrongdoing," for w e would be descending into the realms of that tautology that is often discussed in Anglo Saxon philosophical circles and amongst moral theologians involved in the current debate about proportionalism. Torture thus described would be "the unjustified infliction of severe pain on another person in order to persuade that person to comply with one's wishes." W h a t w e need to k n o w is w h e n torture—in the first ofthe above definitions—would be justifiable. Clearly, only a teleological approach could give us that information. W h e n w e turn to the world of gene therapy, w e find the same temptation to simplify things by drawing a line and saying that, at this point (wherever it m a y be), w e must change from our usual—predominantly teleological—approach to ethical problems and adopt instead a deontological one. W e do not find the same kind of tautology which arises in other spheres of ethics from either the dictionary definitions or the popular usage of w o r d s — w o r d s like "torture," "murder,' "stealing," and "lying"—probably because genetic engineering as a discipline is simply not old enough to have acquired words that imply a condemnation ofthe action they signify. W e do, however, find terms that seem to contain some kind of evaluation. Such terminology can very easily mislead us in our attempts to judge the rightness of wrongness of particular actions. "Enhancement genetic engineering" is an example, for its use can easily lead us to assume, without due consideration of what is involved, that the activity in question is not to be regarded as a serious matter and should probably never be regarded as real therapy. Another example is "eugenic genetic engineering." Not surprisingly, given the history of positive and negative eugenics, as well as media speculation regarding the more spectacular possibilities in the field of genetic engineering, the use of a term like "eugenic genetic engineering" can all too easily give rise to the same sort of emotional response that the word "torture" provokes, and thereby inhibit our ability to reason clearly regarding the possible use, in a particular case, of something which would normally c o m e under the heading "eugenic genetic engineering." In what follows, all such implied value judgments will be ignored, and any drawing of lines will be based on teleological-type reasoning. I shall adopt the previous classification and divide into four categories the application of genetic engineering for the insertion of a gene into a h u m a n being: (i) somatic cell gene therapy; (ii) germ-line gene therapy; (iii) enhancement genetic engineering; and (iv) eugenic genetic engineering.
SOMATIC CELL G E N E THERAPY What we are concerned with under this heading is the correction (or attempted correction) of genetic defects in any ofthe cells ofthe patient's body other than the germ (or reproductive) cells. Needless to say, there are m a n y such defects. At the present stage of research, the most promising vehicle for carrying cloned genes into cells would appear to be the retrovirus vector. The retrovirus would, of course, have to be rendered harmless. Regarding the ethics of what has been mentioned so far, w e should perhaps first note that, where medical research is concerned, it is usual and quite proper to draw the line 'for the time being.' A s n e w techniques are tried, tested, and found to work without disastrous side effects, the line is moved. W h e r e a completely n e w kind of therapy (like, for instance, somatic cell gene therapy) is concerned, one begins by drawing the line at all forms of that therapy until one is reasonably sure that a particular form of it will, in certain cases at least, be more beneficial than damaging to the patients concerned. W h e n w e have reached such a level of certainty and are equally sure that there are no harmful effects to third parties to be taken into account, w e m a y m o v e our line, in the hope, of course, that w e m a y be able to m o v e it even further at a later date w h e n n e w , safe techniques permit us to do so. Given our lack of knowledge, the complexity of what w e are dealing with, and the potential danger associated with mismanagement, researchers should proceed with extreme caution. Reflecting this attitude, Anderson and Fletcher stated in 1980 that, in their opinion, no clinical trial should take place until it could be shown from animal studies that: "(i) the n e w gene can be put into the correct target cells and will remain there 300
GENE THERAPY: WHERE TO DRAW THE LINE
long enough to be effective; (ii) the new gene will be expressed in the cells at an appropriate level; and (iii) t n e w gene will not harm the cell, or, by extension, the animal."(3) In other words, the n e w treatment should get to the area of disease, correct the fault, and do more good than harm. If such proves to be the case, w e should then draw the line at any other kind of gene therapy that has not yet been found to satisfy these requirements. Supposing, however, that the "simple" form of gene therapy described above fails to satisfy the requirements. After all, even the murine retrovirus vector, which is at present considered to be the most promising and the safest vector available, might induce cancer. Nobody, it would seem, denies that there is at least a slight possibility of cancer appearing at a later stage in patients w h o receive gene therapy. O n the other hand, a similar danger already exists in other long-accepted therapies. In these latter cases, it is considered that exposing the patient to a slight risk of cancer can be justified because the conditions being treated are life threatening. The same kind of reasoning could be applied to gene therapy if it were confined to life-threatening conditions. The danger of accidentally producing a n e w virus, however, is not so easily dismissed. Even if w e ignored the clamour of those w h o suggest that the h u m a n retrovirus H I V was the result of a laboratory accident, w e would be foolish to assume that an accident of such a kind was impossible. Given the enthusiasm for research and experimentation involving retrovirus vectors, one assumes that the scientists concerned do not consider it likely that the use of such vectors will result in the production of n e w viruses (through, for example, the recombination of the retrovirus vector with the genome of the infected cells or with another virus that just happens to be present). However, the fact remains that it is not possible at this stage to k n o w the h u m a n genome in detail, and the same, it would seem, is true regarding all other mammalian genomes. C a n w e , then, be reasonably certain that the danger of creating n e w viruses is remote? If the condition to be treated is life threatening, a slight risk of contracting a n e w virus might be justified. However, where viruses are concerned, w e have to take into account the chances of their spreading to other people. Retroviruses, it seems, are usually not easily transmitted, but this is small comfort. A n obvious example of a difficult-to-transmit retrovirus is HIV. Knowing h o w difficult it is to transmit would not, I think, encourage us to run the risk of producing a n e w virus that had similar power and was equally difficult to pass on to other people. If further research were to show that the chances of producing a new virus that was both pathogenic and infectious were negligible and that the risk of cancer was only very slight, then w e might m o v e our line so that, instead of opposing all somatic cell gene therapy (indeed all gene therapy), w e would be in favor of employing it in certain cases in which the patient's condition was life threatening and in which there was every reason to believe that he or she would benefit from the therapy. W e would then draw the line at the use of gene therapy in other cases, but, I repeat, such drawing of lines would be a temporary measure. Future developments might well induce us to condone m u c h more, or, if unforeseen problems arise, m u c h less.
GERM-LINE G E N E THERAPY To be cured of a hereditary disease by means of somatic cell gene therapy and then to pass on that same disease to one's children would certainly be an upsetting business. Presumably, the children could be cured by means ofthe same technique, provided there were no additional complications in their cases. Nevertheless, it would be m u c h more convenient and less distressing if gene therapy could be extended to the germ (or reproductive) cells in order that the cured defect might not be inherited. It is conceivable that, in this way, defects that are at present quite c o m m o n could be reduced to extreme rarity. Germ-line therapy, however, brings with it problems that are not so likely to be encountered in the employment of somatic cell gene therapy. A n y mistake or side effect could be inherited by one's children and by generations of their descendants. Evolution could presumably be affected if mutations thus induced were passed on from generation to generation. For that reason alone (without even taking into consideration the difficulties still to be overcome in the sphere of somatic cell gene therapy), every responsible researcher would be expected to draw the line at 301
HOOSE all forms of germ-line therapy. The line is, needless to say, a temporary one, but the present level of ignorance on the part of researchers regarding both the possible side effects and what is likely to constitute a mistake makes it likely that the line in question will need to stay where it is long into the future.(4) In parentheses, w e could say that such a delay in the application of germ-line therapy would not necessarily mean that there would be no interference with germ cells through genetic manipulation if the line drawn against the practice of somatic cell gene therapy were moved too quickly or too easily. In the previous section, w e discussed the possibility that using a retrovirus vector to transfer the exogenous gene to the target cells might cause a n e w virus to be formed. Although it is considered unlikely that such a virus would or could play havoc in the patient's germ line, w e cannot say with certainty that such an outcome is impossible. A n y likelihood that this might happen should, of course, delay the moving of lines drawn in the sphere of somatic cell gene therapy. Having said all this, w e should still be open to the possibility that, some time in the future—perhaps m a n y decades from now—scientists will acquire sufficient knowledge about the h u m a n genome and about evolutionary processes to be able to indulge in germ-line therapy, as well as somatic cell gene therapy, without causing any adverse effects on the gene pool.(5) However, there is still likely to be disagreement regarding which "abnormalities" are to be considered defects. Parent and offspring m a y reasonably be expected to agree on the desirability of eradicating certain diseases, but such accord might not be present if a certain freakish trait, which would perhaps be advantageous to the next or a later generation, were eradicated from a certain family.
ENHANCEMENT GENETIC ENGINEERING Here too we meet the usual problems of ignorance and safety. Hence, we find Anderson pointing out that, although correcting faulty genes will probably not be dangerous, inserting genes to m a k e more of one product might have an adverse effect on other biochemical pathways.(6) A little further on in the same article he asks: " W h y would anyone want to insert a growth hormone gene into a normal child? Once it is in, there is no w a y to get it back out. The child's reflexes, coordination and balance might all be grossly affected. In addition, even more serious questions can be asked: might one alter the regulatory pathways of cells, inadvertently affecting cell division or other properties?" H e concludes that "we k n o w too little about the h u m a n body to chance inserting a gene designed for " improvement" into a normal healthy person."(7) All of this would certainly be more than enough to induce us to draw the line at enhancement genetic engineering—but again only temporarily. A n increase in knowledge and the development of safety features could obviously change our w a y of looking at things. Moreover, w e would be rash to assume that there could never be serious reasons for seeking to use or experience enhancement genetic engineering. The conditions that would call for it are not in themselves life threatening. If they were, w e would not deal with them under this heading. However, the question remains: If at some future date developments in gene therapy resulted in m u c h safer techniques, is it not possible and even likely that the use of medical expertise and expensive equipment for the enhancement of people w h o might not normally be described as "ill" could be justified? After all, some people m a y experience dwarfism, or even gigantism, as a malady. Something similar could be said about a person whose muscles did not develop in a satisfactory way, or about a person w h o was grotesque in appearance. Enhancement that was nothing more than beautifying could easily be dismissed as trivial nonsense, but w e would be unwise to m a k e such a sweeping judgment. Describing his reactions upon first seeing Joseph Merrick (otherwise k n o w n as the elephant m a n ) , Sir Frederick Treves, w h o took him under his wing and cared for him, wrote: "There stood revealed the most disgusting specimen of humanity that I have ever seen."(8) Merrick, it seems, was a victim ofthe hereditary disease neurofibromatosis. It might therefore be objected that he is not a suitable example of the sort of person w h o would have benefitted from enhancement genetic engineering. It would be foolish to counter such an objection. A n y attempt to cure such a person would clearly 302
GENE THERAPY: W H E R E TO D R A W THE LINE not be mere enhancement genetic engineering. The point I wish to make, however, is that an enormous percentage of Merrick's suffering was clearly directly attributable to his ugliness. O n e day, when he arrived in London from Ostend he caused great commotion at Liverpool Street Station. In a passage in which he tried to envisage something of Merrick's ordeal, Treves wrote: "All he wanted was to hide. W h a t he most dreaded were the open street and the gaze of his fellow men. If even he crept into a cellar the horrid eyes and the still more deeply dreaded whispers would follow him to its depths. W a s there ever such a homecoming? At Liverpool Street he was rescued from the crowd by the police and taken into the third class waiting room."(9) It m a y be difficult to envisage a case of grotesque appearance that was not caused by a disease and that could be cured by enhancement genetic engineering. T h e fact remains, however, that, if such a case existed, enhancement would be a serious need. The same could be said about m a n y other conditions that w e would not usually describe as illnesses. W e should bear in mind, moreover, that it would be unwise to generalize about the ethics of dealing with any one of these conditions. T w o people could share the same condition but have different needs. M u c h would depend upon such factors as psychological make-up and cultural pressures.
EUGENIC GENETIC ENGINEERING This term can be a confusing one. Some definitions referring to improvement of the human species by means of genetic engineering could be said to include all or at least part of what w e have discussed thus far. Nowadays, however, the term tends to be used increasingly to refer to that kind of genetic engineering that deals with more than the curing of a single disease or other defect. Sometimes, it is seen as a way of improving the whole h u m a n race. This inevitably raises the spectre of Nazis seeking out and killing those w h o cannot or will not become part of the master race. That need not necessarily happen, but, in view of the fact that something of the kind has already been k n o w n to occur, the problem must be faced. In short, there is a fear among scientists and nonscientists alike that a policy of improving the whole human race or even the population of just one country could result in the culling of the unfit, or at least in their becoming objects of discrimination. W e do well to continue to m a k e people aware of the danger of something similar to a repetition of Nazi policies—even though what w e are discussing here would involve m u c h more than selective breeding and culling.(10) W e also do well to educate those w h o need to be educated regarding the wrongfulness of such policies. However, any attempt to obviate the danger by pressing for laws against the practice of eugenic genetic engineering would seem to be futile. The sort of policies w e are referring to are imposed by governments, and governments like those envisaged make laws to suit themselves. One's only hope would be that education ofthe people would prevent such a government from gaining power, or at least from having it for long, assuming that the nation in question were democratically run. A s for discrimination, prejudice, and elitism, it might be useful to compare what could happen as a result of eugenic genetic engineering with what is already happening now. S o m e forms of blind prejudice—based on differences connected with race, color, religion, sex, sexual orientation, etc.—are blatantly obvious as well as being very c o m m o n . Certain forms of elitism, often based on those same differences, are more subtly expressed. The recent bicentennial celebrations in Australia are an example of European elitism. References to the "discovery" of the American Continent are another/10 If w e look more closely at the European countries themselves, w e find an interesting kind of elitism that seems to have c o m e about in spite o f — w e might even say because of—attempts to bring about equality. Before the days of compulsory education for all, there was in those countries an elite group, or, perhaps more accurately, several elite groups: e.g., the nobility (educated and otherwise); the clergy (usually educated); the nonaristocratic rich (educated and otherwise); others w h o were educated. A policy of education for all might have been seen by some as a w a y of making everybody equal, but that too has produced an elite: those w h o succeed in studying well. It could perhaps be said in parentheses that there is even a kind of super elite composed of those w h o not only can study, but w h o 303
HOOSE also apply themselves with relish to their studies (people with doctorates for example!). There is (in theory) equal opportunity in education, but there is certainly not equal ability. If that is experienced as bad, as it undoubtedly is by some (but not all) of those w h o do not belong to the elite, eugenic genetic engineering could conceivably improve the situation by ensuring that nobody had a very low intelligence quotient and by making various other improvements that would enable people to study better. In other words, it could result in less elitism.(12) Another serious objection, however, comes from within the scientific community. "If eugenic genetic engineering were possible today, I would be strongly opposed to its use on philosophical and ethical grounds."'13) W h e n he wrote these words French Anderson based his opposition on our present lack of knowledge and understanding concerning the h u m a n body, the h u m a n mind, and indeed "humanhood." For the purposes ofthe present work, w e would, I think, do well to consider in this section, as w e have done in the preceding ones, the likelihood that our knowledge and understanding will increase considerably. Nevertheless, it is worth pointing out that the increase in knowledge and understanding demanded here is one of enormous proportions.
A F E W REFLECTIONS T o arrive at a behavioral norm ... , a whole complex of factors obviously has to be considered W h a t must be determined is the significance of the action as value or non value for the individual, for interpersonal relations, and for h u m a n society, in connection, of course, with the total reality of m a n and his society and in view of his whole culture. Furthermore, the priority and urgency ofthe different values implied must be weighed. B y this procedure, m a n as assessor (the evaluating h u m a n society) arrives at a judgment, tentatively or with some measure of certitude, as to which m o d e of behavior might further man's self realization and selfdevelopment.*1^ Further on in the article in which he wrote the above words, Josef Fuchs added: "Theoretically, no other answer seems possible: one cannot easily formulate universal norms of behavior in the strict sense of intrinsece malum."{l5) The validity of these words, at least when applied to gene therapy, must n o w be clear. It would clearly be unwise on our part to attempt to permanently draw the line at any one ofthe four categories of gene therapy that w e have discussed. Provided that there is an (admittedly enormous) increase in our knowledge and understanding ofthe h u m a n genome and of all the other factors involved, and provided that w e can arrive at a reasonable degree of certainty regarding the safety of the techniques employed, a case can be made for allowing all four kinds of gene therapy, at least in certain cases. In fact, one of the principal conclusions of this paper has to be that our approach to gene therapy should be basically the approach w e take toward therapies in general. The differences that exist are mainly differences of proportion: Success in the field of gene therapy could be more spectacular than anything w e have so far seen in conventional medicine, while the results of abuse could be disastrous. Another difference is that, at this stage, so m u c h of what w e say about gene therapy is merely hypothetical, largely because w e cannot predict all (or even m a n y ) ofthe dilemmas that will arise in this field. Suppose, for example, w e were to discover that sexual orientation could be altered by means of gene therapy. A proposal to eradicate homosexuality in this way could prove to be controversial. A proposal to allow people to change their sexual orientation in either direction would be even more controversial. W e could discuss such matters at length, but our discussion would contain an enormous number of "ifs." Such a discussion would have value only inasmuch as it threw light on h o w w e should deal with such dilemmas when and if they arose. It would show that w e have to use the kind of reasoning that Fuchs refers to above. W e would "tentatively or with some measure of certitude," arrive at a judgment as to which m o d e or modes of behavior would be right, while remaining open to the fact that there will be other—perhaps only slightly different—cases that w e have not foreseen and that will contain n e w 304
GENE THERAPY: W H E R E TO D R A W THE LINE
elements that could lead to very different judgments in those cases. What is important is that we do not fall int the trap of prejudging, and hypothetical cases can help in that regard by pointing to factors that would otherwise be hidden from us by evaluative terms like "enhancement genetic engineering" and "eugenics." The above discussion about ugliness illustrates this fact. Having read all of this, one could easily conclude that our task is nothing more or less than to discover what is best for humans. A s a general insight, such a statement is quite a valuable one, but, unfortunately, on a more particular level, it can be very difficult in some cases to work out what is best for humans or what is the most h u m a n thing to do. W h y else do w e have so m a n y moral dilemmas? W h a t w e might at this stage call "conventional medicine," is, of course, very m u c h concerned with what is best for humans, and often runs into ethical problems. T o help them in this regard, practitioners ofthe medical sciences have at least a vague idea of what is normal in h u m a n bodies. They concern themselves with h o w to return a body to this normality or at least with h o w to get it as close as possible to normality. In working out whether or not they can justify the infliction of certain nonmoral evils (pain, mutilation, etc.) on their patients, one ofthe weightiest elements they take into account is this nonmoral good which w e can call "bringing to, or as near as possible to, what is considered to be normal for humans." If w e compare the four categories of gene therapy that w e have discussed in this paper with conventional medicine, w e find that there are some notable differences. Somatic cell gene therapy is similar to the older forms of medicine in that—at least in its present envisaged form—it is principally concerned with h o w to arrive at normality or some semblance of normality. The other three categories of gene therapy, however, can very easily m o v e into another region in which the question is not about h o w to arrive at normality, but rather about what constitutes, or could constitute, or indeed should constitute normality for humans. Using enhancement genetic engineering, for example, w e could perhaps increase the dimensions of bodies by some considerable degree. After a certain period of time, if enough giants were produced in this way, would people of these dimensions be considered abnormal? Using eugenic genetic engineering, w e could produce "improvements" that would in fact be alterations. W e could presumably produce characteristics that, until now, have never been k n o w n in humans. If there were a sufficient number of people with these characteristics, would they continue to be considered abnormal? The answer to both questions must be that people with the new characteristics would probably be considered abnormal for as long as it was necessary to undergo some form of operation to acquire these characteristics. If, however, germ-line "therapy" allowed us to pass these characteristics on to our offspring, w e could conceivably change the ideal of the h u m a n body to such an extent that the above-mentioned modifications would be universally accepted as normal. This would still leave us with the question: Which would be better for humans, the old normality or the n e w one? If w e were not certain regarding the superiority of a proposed n e w normality, w e could clearly not justify inflicting it on our descendants. N o w , it is true that w e already make decisions regarding the state of some children's bodies at a time when they are too young to either give or withhold permission, but such "interference" is usually aimed at what is universally accepted as normal. The question w e need to answer is: Should w e inflict a new normality on them? Before proceeding, it seems to m e , w e would need to be very sure indeed regarding what would constitute an improvement in the h u m a n body. Again, however, w e would be rash to presume that such action could never be justified. A disaster of a certain kind could render the environment hostile to humans in their present form. In such circumstances, might it not be possible to justify some enhancement or change that would improve the fitness of people for the changed environment, and might they not be justified in passing on those modifications to their offspring? Clearly, w e have to obviate the danger that comes from whims and fancies. Advances in the fields of biology and medical science are already close to the point at which n e w kinds of disasters of enormous dimensions could result from abuse of knowledge. The comparatively simple business of choosing the sex of one's child, for instance, could cause sexual imbalance and amazing reductions in the size ofthe populations of certain parts ofthe world where the vast majority of parents have a clear preference for male children. If any kind of catastrophe, major or minor, can be avoided, w e should obviously avoid it. W h y w e should draw a line 305
HOOSE where gene therapy is concerned is therefore obvious. Where we should draw the line depends upon our present level of knowledge and understanding and upon the development of safety features. Bearing this in mind, it would seem to m e that, for the time being, w e should draw the line at all forms of gene therapy, except in specific cases that are carefully evaluated in advance. It is worth pointing out, moreover, that experiments on animals should be conducted with extreme caution. Interference in the gene pool of any species could well have repercussions far beyond that particular species. Having thus indicated where I think our line should be drawn, however, let m e repeat that I a m speaking only about the present. In 5 years from n o w the line may be in a very different place with the blessing ofthe present writer. Indeed, if the required increase in knowledge and safety were to come about, it would be quite wrong to prohibit the use of somatic cell gene therapy for people suffering from terminal diseases that were otherwise incurable.
REFERENCES A N D NOTES 1. MCCORMICK, R.A., (1981). Notes on Moral Theology 1965 through 1980. (Lanham, Md.), p. 766. 2. Ibid. 3. A N D E R S O N , W.F., and FLETCHER, J.C, (1980). Gene therapy in human beings: When is it ethical to begin? N. Engl. J. Med. 303, 1293-1297. 4. Anderson warns: "It should be remembered that gene therapy does not remove or correct the defective genes in the recipient: it only adds a normal gene into the genome. It is not now known what the influence of this combination of defective and normal genes may be on the developing embryo. Might the regulatory signals still associated with the non functional genes adversely affect the regulation ofthe exogenous gene during development?'' Anderson, W.F. (1985) Human gene therapy: Scientific and ethical considerations. J. Med. Philos. 10, 286. 5. cf. F R I E D M A N N , T. (1989). Progress toward human gene therapy. Science 244, 1280. 6. A N D E R S O N , W.F. Human gene therapy. , p. 288. 7. Ibid. 8. Quoted in, Trombley, S. (1989). Sir Frederick Treves: The Extra-Ordinary Edwardian. (London) p. 37. Originally in, Treves, S. (1923). The Elephant Man and Other Reminiscences. (Cassell & Co., London). Treves always refers to Merrick as John, but Trombley points out that, according to his birth certificate, his name was Joseph. Apparently, the only parts of Joseph Merrick's body that were normal in appearance were his sexual organs and his left arm. To make matters worse, during his childhood he suffered from a hip disease which left him permanently lame. He was therefore unable to run away from his tormentors, (ibid., p. 38). 9. Ibid., p. 41. 10. Regarding 'more benign forms' of eugenic doctrine, see Chan, C.K. (1987). Eugenics on the rise: A report from Singapore. In Ethics, Reproduction and Genetic Control, R.F. Chadwick (ed.). (London) p. 164-171. 11. The supposed superiority of white Anglo-Saxon Protestants in the United States in the not too distant past was an example of an even more restricted elitism. 12. Cf. SINSHEIMER, R.L., The prospect of designed genetic change. In Ethics, Reproduction and Genetic Control, pp. 144-146. 13. A N D E R S O N , W.F., Human gene therapy , p. 289. 14. FUCHS, J., (1983). The absoluteness of behavioral moral norms. In Personal Responsibility and Christian Morality. (Georgetown University Press, Washington) p. 131. 15. Ibid., p. 141. Address reprint requests to: Bernard Hoose Allington Castle Maidstone Kent, M E 1 6 O N B England Received for publication June 5, 1990; accepted July 3, 1990.
306
G e n e T h e r a p y : W h e r e to D r a w the L i n e
BERNARD HOOSE
ABSTRACT The four classifications of genetic manipulation (somatic cell gene therapy, germ-line gene therapy, enhancement genetic engineering, eugenic genetic engineering) are reviewed from an ethical viewpoint. Immediately, it needs to be recognized that words like "therapy," "enhancement," and "eugenic" already possess an emotional framework, so that careful reasoning is m a d e more difficult. In each ofthe areas of genetic manipulation, it can be argued that circumstances could be imagined that would either justify or not justify proceeding. Based on our present state of knowledge, the line should be drawn at not carrying out gene therapy of any type except in specific cases that are carefully evaluated in advance. With increased knowledge, the line should be moved to embrace appropriate situations.
OVERVIEW S U M M A R Y Ethical debates sometimes flounder on semantic misunderstandings. Hoose critically examines the ethical arguments m a d e for and against the various types of genetic manipulation. H e argues that there are really no definitive permanent conclusions that can be drawn. In the last analysis, our task is to discover what is best for h u m a n s or what is the most h u m a n thing to do.
•• T accept that violence may be employed in certain situations, but I draw the line at torture." Statements Xsuch as this betray that urge, which is extremely c o m m o n amongst humans, to seek the security and apparent simplicity of deontological norms. Decision-making seems to be simplified if one feels that one can safely say that such and such an action would always be wrong regardless of the ends and circumstances that might be involved. Unfortunately for the simplicity seekers, moral decision-making is not quite so simple as that, and even torture requires a more teleological approach. "If I apprehend one of two thugs on their way to execute m y brother or sister (at the time, I a m not sure which one), I would apply a very effective and increasingly painful armlock to find out which, so that I could warn him/her," writes Richard McCormick. H e then asks: "Is that torture?"0} The answer, I would say, must be in the affirmative if w e take the word "torture" to mean "the infliction of severe pain on another person in order to persuade that person to comply with one's wishes." In that case, McCormick-and, one imagines, the vast majority of moral philosophers and theologians—could not claim to draw the line at torture. They would surely say that its use could be justified in certain instances. McCormick, however, points out that" ktorture' in most discourse refers to the type of pain that causes moral revulsion. In other words, in its most frequent usage it is a value term, already containing its o w n condemnation (disproportion) in the context or tone."(2)
Allington Castle, Maidstone, Kent, M E 1 6 O N B , England 299
HOOSE With such a meaning of the word in mind, we could all draw the line at torture, but, in saying that, we would be saying no more than "we draw the line at wrongdoing," for w e would be descending into the realms of that tautology that is often discussed in Anglo Saxon philosophical circles and amongst moral theologians involved in the current debate about proportionalism. Torture thus described would be "the unjustified infliction of severe pain on another person in order to persuade that person to comply with one's wishes." W h a t w e need to k n o w is w h e n torture—in the first ofthe above definitions—would be justifiable. Clearly, only a teleological approach could give us that information. W h e n w e turn to the world of gene therapy, w e find the same temptation to simplify things by drawing a line and saying that, at this point (wherever it m a y be), w e must change from our usual—predominantly teleological—approach to ethical problems and adopt instead a deontological one. W e do not find the same kind of tautology which arises in other spheres of ethics from either the dictionary definitions or the popular usage of w o r d s — w o r d s like "torture," "murder,' "stealing," and "lying"—probably because genetic engineering as a discipline is simply not old enough to have acquired words that imply a condemnation ofthe action they signify. W e do, however, find terms that seem to contain some kind of evaluation. Such terminology can very easily mislead us in our attempts to judge the rightness of wrongness of particular actions. "Enhancement genetic engineering" is an example, for its use can easily lead us to assume, without due consideration of what is involved, that the activity in question is not to be regarded as a serious matter and should probably never be regarded as real therapy. Another example is "eugenic genetic engineering." Not surprisingly, given the history of positive and negative eugenics, as well as media speculation regarding the more spectacular possibilities in the field of genetic engineering, the use of a term like "eugenic genetic engineering" can all too easily give rise to the same sort of emotional response that the word "torture" provokes, and thereby inhibit our ability to reason clearly regarding the possible use, in a particular case, of something which would normally c o m e under the heading "eugenic genetic engineering." In what follows, all such implied value judgments will be ignored, and any drawing of lines will be based on teleological-type reasoning. I shall adopt the previous classification and divide into four categories the application of genetic engineering for the insertion of a gene into a h u m a n being: (i) somatic cell gene therapy; (ii) germ-line gene therapy; (iii) enhancement genetic engineering; and (iv) eugenic genetic engineering.
SOMATIC CELL G E N E THERAPY What we are concerned with under this heading is the correction (or attempted correction) of genetic defects in any ofthe cells ofthe patient's body other than the germ (or reproductive) cells. Needless to say, there are m a n y such defects. At the present stage of research, the most promising vehicle for carrying cloned genes into cells would appear to be the retrovirus vector. The retrovirus would, of course, have to be rendered harmless. Regarding the ethics of what has been mentioned so far, w e should perhaps first note that, where medical research is concerned, it is usual and quite proper to draw the line 'for the time being.' A s n e w techniques are tried, tested, and found to work without disastrous side effects, the line is moved. W h e r e a completely n e w kind of therapy (like, for instance, somatic cell gene therapy) is concerned, one begins by drawing the line at all forms of that therapy until one is reasonably sure that a particular form of it will, in certain cases at least, be more beneficial than damaging to the patients concerned. W h e n w e have reached such a level of certainty and are equally sure that there are no harmful effects to third parties to be taken into account, w e m a y m o v e our line, in the hope, of course, that w e m a y be able to m o v e it even further at a later date w h e n n e w , safe techniques permit us to do so. Given our lack of knowledge, the complexity of what w e are dealing with, and the potential danger associated with mismanagement, researchers should proceed with extreme caution. Reflecting this attitude, Anderson and Fletcher stated in 1980 that, in their opinion, no clinical trial should take place until it could be shown from animal studies that: "(i) the n e w gene can be put into the correct target cells and will remain there 300
GENE THERAPY: WHERE TO DRAW THE LINE
long enough to be effective; (ii) the new gene will be expressed in the cells at an appropriate level; and (iii) t n e w gene will not harm the cell, or, by extension, the animal."(3) In other words, the n e w treatment should get to the area of disease, correct the fault, and do more good than harm. If such proves to be the case, w e should then draw the line at any other kind of gene therapy that has not yet been found to satisfy these requirements. Supposing, however, that the "simple" form of gene therapy described above fails to satisfy the requirements. After all, even the murine retrovirus vector, which is at present considered to be the most promising and the safest vector available, might induce cancer. Nobody, it would seem, denies that there is at least a slight possibility of cancer appearing at a later stage in patients w h o receive gene therapy. O n the other hand, a similar danger already exists in other long-accepted therapies. In these latter cases, it is considered that exposing the patient to a slight risk of cancer can be justified because the conditions being treated are life threatening. The same kind of reasoning could be applied to gene therapy if it were confined to life-threatening conditions. The danger of accidentally producing a n e w virus, however, is not so easily dismissed. Even if w e ignored the clamour of those w h o suggest that the h u m a n retrovirus H I V was the result of a laboratory accident, w e would be foolish to assume that an accident of such a kind was impossible. Given the enthusiasm for research and experimentation involving retrovirus vectors, one assumes that the scientists concerned do not consider it likely that the use of such vectors will result in the production of n e w viruses (through, for example, the recombination of the retrovirus vector with the genome of the infected cells or with another virus that just happens to be present). However, the fact remains that it is not possible at this stage to k n o w the h u m a n genome in detail, and the same, it would seem, is true regarding all other mammalian genomes. C a n w e , then, be reasonably certain that the danger of creating n e w viruses is remote? If the condition to be treated is life threatening, a slight risk of contracting a n e w virus might be justified. However, where viruses are concerned, w e have to take into account the chances of their spreading to other people. Retroviruses, it seems, are usually not easily transmitted, but this is small comfort. A n obvious example of a difficult-to-transmit retrovirus is HIV. Knowing h o w difficult it is to transmit would not, I think, encourage us to run the risk of producing a n e w virus that had similar power and was equally difficult to pass on to other people. If further research were to show that the chances of producing a new virus that was both pathogenic and infectious were negligible and that the risk of cancer was only very slight, then w e might m o v e our line so that, instead of opposing all somatic cell gene therapy (indeed all gene therapy), w e would be in favor of employing it in certain cases in which the patient's condition was life threatening and in which there was every reason to believe that he or she would benefit from the therapy. W e would then draw the line at the use of gene therapy in other cases, but, I repeat, such drawing of lines would be a temporary measure. Future developments might well induce us to condone m u c h more, or, if unforeseen problems arise, m u c h less.
GERM-LINE G E N E THERAPY To be cured of a hereditary disease by means of somatic cell gene therapy and then to pass on that same disease to one's children would certainly be an upsetting business. Presumably, the children could be cured by means ofthe same technique, provided there were no additional complications in their cases. Nevertheless, it would be m u c h more convenient and less distressing if gene therapy could be extended to the germ (or reproductive) cells in order that the cured defect might not be inherited. It is conceivable that, in this way, defects that are at present quite c o m m o n could be reduced to extreme rarity. Germ-line therapy, however, brings with it problems that are not so likely to be encountered in the employment of somatic cell gene therapy. A n y mistake or side effect could be inherited by one's children and by generations of their descendants. Evolution could presumably be affected if mutations thus induced were passed on from generation to generation. For that reason alone (without even taking into consideration the difficulties still to be overcome in the sphere of somatic cell gene therapy), every responsible researcher would be expected to draw the line at 301
HOOSE all forms of germ-line therapy. The line is, needless to say, a temporary one, but the present level of ignorance on the part of researchers regarding both the possible side effects and what is likely to constitute a mistake makes it likely that the line in question will need to stay where it is long into the future.(4) In parentheses, w e could say that such a delay in the application of germ-line therapy would not necessarily mean that there would be no interference with germ cells through genetic manipulation if the line drawn against the practice of somatic cell gene therapy were moved too quickly or too easily. In the previous section, w e discussed the possibility that using a retrovirus vector to transfer the exogenous gene to the target cells might cause a n e w virus to be formed. Although it is considered unlikely that such a virus would or could play havoc in the patient's germ line, w e cannot say with certainty that such an outcome is impossible. A n y likelihood that this might happen should, of course, delay the moving of lines drawn in the sphere of somatic cell gene therapy. Having said all this, w e should still be open to the possibility that, some time in the future—perhaps m a n y decades from now—scientists will acquire sufficient knowledge about the h u m a n genome and about evolutionary processes to be able to indulge in germ-line therapy, as well as somatic cell gene therapy, without causing any adverse effects on the gene pool.(5) However, there is still likely to be disagreement regarding which "abnormalities" are to be considered defects. Parent and offspring m a y reasonably be expected to agree on the desirability of eradicating certain diseases, but such accord might not be present if a certain freakish trait, which would perhaps be advantageous to the next or a later generation, were eradicated from a certain family.
ENHANCEMENT GENETIC ENGINEERING Here too we meet the usual problems of ignorance and safety. Hence, we find Anderson pointing out that, although correcting faulty genes will probably not be dangerous, inserting genes to m a k e more of one product might have an adverse effect on other biochemical pathways.(6) A little further on in the same article he asks: " W h y would anyone want to insert a growth hormone gene into a normal child? Once it is in, there is no w a y to get it back out. The child's reflexes, coordination and balance might all be grossly affected. In addition, even more serious questions can be asked: might one alter the regulatory pathways of cells, inadvertently affecting cell division or other properties?" H e concludes that "we k n o w too little about the h u m a n body to chance inserting a gene designed for " improvement" into a normal healthy person."(7) All of this would certainly be more than enough to induce us to draw the line at enhancement genetic engineering—but again only temporarily. A n increase in knowledge and the development of safety features could obviously change our w a y of looking at things. Moreover, w e would be rash to assume that there could never be serious reasons for seeking to use or experience enhancement genetic engineering. The conditions that would call for it are not in themselves life threatening. If they were, w e would not deal with them under this heading. However, the question remains: If at some future date developments in gene therapy resulted in m u c h safer techniques, is it not possible and even likely that the use of medical expertise and expensive equipment for the enhancement of people w h o might not normally be described as "ill" could be justified? After all, some people m a y experience dwarfism, or even gigantism, as a malady. Something similar could be said about a person whose muscles did not develop in a satisfactory way, or about a person w h o was grotesque in appearance. Enhancement that was nothing more than beautifying could easily be dismissed as trivial nonsense, but w e would be unwise to m a k e such a sweeping judgment. Describing his reactions upon first seeing Joseph Merrick (otherwise k n o w n as the elephant m a n ) , Sir Frederick Treves, w h o took him under his wing and cared for him, wrote: "There stood revealed the most disgusting specimen of humanity that I have ever seen."(8) Merrick, it seems, was a victim ofthe hereditary disease neurofibromatosis. It might therefore be objected that he is not a suitable example of the sort of person w h o would have benefitted from enhancement genetic engineering. It would be foolish to counter such an objection. A n y attempt to cure such a person would clearly 302
GENE THERAPY: W H E R E TO D R A W THE LINE not be mere enhancement genetic engineering. The point I wish to make, however, is that an enormous percentage of Merrick's suffering was clearly directly attributable to his ugliness. O n e day, when he arrived in London from Ostend he caused great commotion at Liverpool Street Station. In a passage in which he tried to envisage something of Merrick's ordeal, Treves wrote: "All he wanted was to hide. W h a t he most dreaded were the open street and the gaze of his fellow men. If even he crept into a cellar the horrid eyes and the still more deeply dreaded whispers would follow him to its depths. W a s there ever such a homecoming? At Liverpool Street he was rescued from the crowd by the police and taken into the third class waiting room."(9) It m a y be difficult to envisage a case of grotesque appearance that was not caused by a disease and that could be cured by enhancement genetic engineering. T h e fact remains, however, that, if such a case existed, enhancement would be a serious need. The same could be said about m a n y other conditions that w e would not usually describe as illnesses. W e should bear in mind, moreover, that it would be unwise to generalize about the ethics of dealing with any one of these conditions. T w o people could share the same condition but have different needs. M u c h would depend upon such factors as psychological make-up and cultural pressures.
EUGENIC GENETIC ENGINEERING This term can be a confusing one. Some definitions referring to improvement of the human species by means of genetic engineering could be said to include all or at least part of what w e have discussed thus far. Nowadays, however, the term tends to be used increasingly to refer to that kind of genetic engineering that deals with more than the curing of a single disease or other defect. Sometimes, it is seen as a way of improving the whole h u m a n race. This inevitably raises the spectre of Nazis seeking out and killing those w h o cannot or will not become part of the master race. That need not necessarily happen, but, in view of the fact that something of the kind has already been k n o w n to occur, the problem must be faced. In short, there is a fear among scientists and nonscientists alike that a policy of improving the whole human race or even the population of just one country could result in the culling of the unfit, or at least in their becoming objects of discrimination. W e do well to continue to m a k e people aware of the danger of something similar to a repetition of Nazi policies—even though what w e are discussing here would involve m u c h more than selective breeding and culling.(10) W e also do well to educate those w h o need to be educated regarding the wrongfulness of such policies. However, any attempt to obviate the danger by pressing for laws against the practice of eugenic genetic engineering would seem to be futile. The sort of policies w e are referring to are imposed by governments, and governments like those envisaged make laws to suit themselves. One's only hope would be that education ofthe people would prevent such a government from gaining power, or at least from having it for long, assuming that the nation in question were democratically run. A s for discrimination, prejudice, and elitism, it might be useful to compare what could happen as a result of eugenic genetic engineering with what is already happening now. S o m e forms of blind prejudice—based on differences connected with race, color, religion, sex, sexual orientation, etc.—are blatantly obvious as well as being very c o m m o n . Certain forms of elitism, often based on those same differences, are more subtly expressed. The recent bicentennial celebrations in Australia are an example of European elitism. References to the "discovery" of the American Continent are another/10 If w e look more closely at the European countries themselves, w e find an interesting kind of elitism that seems to have c o m e about in spite o f — w e might even say because of—attempts to bring about equality. Before the days of compulsory education for all, there was in those countries an elite group, or, perhaps more accurately, several elite groups: e.g., the nobility (educated and otherwise); the clergy (usually educated); the nonaristocratic rich (educated and otherwise); others w h o were educated. A policy of education for all might have been seen by some as a w a y of making everybody equal, but that too has produced an elite: those w h o succeed in studying well. It could perhaps be said in parentheses that there is even a kind of super elite composed of those w h o not only can study, but w h o 303
HOOSE also apply themselves with relish to their studies (people with doctorates for example!). There is (in theory) equal opportunity in education, but there is certainly not equal ability. If that is experienced as bad, as it undoubtedly is by some (but not all) of those w h o do not belong to the elite, eugenic genetic engineering could conceivably improve the situation by ensuring that nobody had a very low intelligence quotient and by making various other improvements that would enable people to study better. In other words, it could result in less elitism.(12) Another serious objection, however, comes from within the scientific community. "If eugenic genetic engineering were possible today, I would be strongly opposed to its use on philosophical and ethical grounds."'13) W h e n he wrote these words French Anderson based his opposition on our present lack of knowledge and understanding concerning the h u m a n body, the h u m a n mind, and indeed "humanhood." For the purposes ofthe present work, w e would, I think, do well to consider in this section, as w e have done in the preceding ones, the likelihood that our knowledge and understanding will increase considerably. Nevertheless, it is worth pointing out that the increase in knowledge and understanding demanded here is one of enormous proportions.
A F E W REFLECTIONS T o arrive at a behavioral norm ... , a whole complex of factors obviously has to be considered W h a t must be determined is the significance of the action as value or non value for the individual, for interpersonal relations, and for h u m a n society, in connection, of course, with the total reality of m a n and his society and in view of his whole culture. Furthermore, the priority and urgency ofthe different values implied must be weighed. B y this procedure, m a n as assessor (the evaluating h u m a n society) arrives at a judgment, tentatively or with some measure of certitude, as to which m o d e of behavior might further man's self realization and selfdevelopment.*1^ Further on in the article in which he wrote the above words, Josef Fuchs added: "Theoretically, no other answer seems possible: one cannot easily formulate universal norms of behavior in the strict sense of intrinsece malum."{l5) The validity of these words, at least when applied to gene therapy, must n o w be clear. It would clearly be unwise on our part to attempt to permanently draw the line at any one ofthe four categories of gene therapy that w e have discussed. Provided that there is an (admittedly enormous) increase in our knowledge and understanding ofthe h u m a n genome and of all the other factors involved, and provided that w e can arrive at a reasonable degree of certainty regarding the safety of the techniques employed, a case can be made for allowing all four kinds of gene therapy, at least in certain cases. In fact, one of the principal conclusions of this paper has to be that our approach to gene therapy should be basically the approach w e take toward therapies in general. The differences that exist are mainly differences of proportion: Success in the field of gene therapy could be more spectacular than anything w e have so far seen in conventional medicine, while the results of abuse could be disastrous. Another difference is that, at this stage, so m u c h of what w e say about gene therapy is merely hypothetical, largely because w e cannot predict all (or even m a n y ) ofthe dilemmas that will arise in this field. Suppose, for example, w e were to discover that sexual orientation could be altered by means of gene therapy. A proposal to eradicate homosexuality in this way could prove to be controversial. A proposal to allow people to change their sexual orientation in either direction would be even more controversial. W e could discuss such matters at length, but our discussion would contain an enormous number of "ifs." Such a discussion would have value only inasmuch as it threw light on h o w w e should deal with such dilemmas when and if they arose. It would show that w e have to use the kind of reasoning that Fuchs refers to above. W e would "tentatively or with some measure of certitude," arrive at a judgment as to which m o d e or modes of behavior would be right, while remaining open to the fact that there will be other—perhaps only slightly different—cases that w e have not foreseen and that will contain n e w 304
GENE THERAPY: W H E R E TO D R A W THE LINE
elements that could lead to very different judgments in those cases. What is important is that we do not fall int the trap of prejudging, and hypothetical cases can help in that regard by pointing to factors that would otherwise be hidden from us by evaluative terms like "enhancement genetic engineering" and "eugenics." The above discussion about ugliness illustrates this fact. Having read all of this, one could easily conclude that our task is nothing more or less than to discover what is best for humans. A s a general insight, such a statement is quite a valuable one, but, unfortunately, on a more particular level, it can be very difficult in some cases to work out what is best for humans or what is the most h u m a n thing to do. W h y else do w e have so m a n y moral dilemmas? W h a t w e might at this stage call "conventional medicine," is, of course, very m u c h concerned with what is best for humans, and often runs into ethical problems. T o help them in this regard, practitioners ofthe medical sciences have at least a vague idea of what is normal in h u m a n bodies. They concern themselves with h o w to return a body to this normality or at least with h o w to get it as close as possible to normality. In working out whether or not they can justify the infliction of certain nonmoral evils (pain, mutilation, etc.) on their patients, one ofthe weightiest elements they take into account is this nonmoral good which w e can call "bringing to, or as near as possible to, what is considered to be normal for humans." If w e compare the four categories of gene therapy that w e have discussed in this paper with conventional medicine, w e find that there are some notable differences. Somatic cell gene therapy is similar to the older forms of medicine in that—at least in its present envisaged form—it is principally concerned with h o w to arrive at normality or some semblance of normality. The other three categories of gene therapy, however, can very easily m o v e into another region in which the question is not about h o w to arrive at normality, but rather about what constitutes, or could constitute, or indeed should constitute normality for humans. Using enhancement genetic engineering, for example, w e could perhaps increase the dimensions of bodies by some considerable degree. After a certain period of time, if enough giants were produced in this way, would people of these dimensions be considered abnormal? Using eugenic genetic engineering, w e could produce "improvements" that would in fact be alterations. W e could presumably produce characteristics that, until now, have never been k n o w n in humans. If there were a sufficient number of people with these characteristics, would they continue to be considered abnormal? The answer to both questions must be that people with the new characteristics would probably be considered abnormal for as long as it was necessary to undergo some form of operation to acquire these characteristics. If, however, germ-line "therapy" allowed us to pass these characteristics on to our offspring, w e could conceivably change the ideal of the h u m a n body to such an extent that the above-mentioned modifications would be universally accepted as normal. This would still leave us with the question: Which would be better for humans, the old normality or the n e w one? If w e were not certain regarding the superiority of a proposed n e w normality, w e could clearly not justify inflicting it on our descendants. N o w , it is true that w e already make decisions regarding the state of some children's bodies at a time when they are too young to either give or withhold permission, but such "interference" is usually aimed at what is universally accepted as normal. The question w e need to answer is: Should w e inflict a new normality on them? Before proceeding, it seems to m e , w e would need to be very sure indeed regarding what would constitute an improvement in the h u m a n body. Again, however, w e would be rash to presume that such action could never be justified. A disaster of a certain kind could render the environment hostile to humans in their present form. In such circumstances, might it not be possible to justify some enhancement or change that would improve the fitness of people for the changed environment, and might they not be justified in passing on those modifications to their offspring? Clearly, w e have to obviate the danger that comes from whims and fancies. Advances in the fields of biology and medical science are already close to the point at which n e w kinds of disasters of enormous dimensions could result from abuse of knowledge. The comparatively simple business of choosing the sex of one's child, for instance, could cause sexual imbalance and amazing reductions in the size ofthe populations of certain parts ofthe world where the vast majority of parents have a clear preference for male children. If any kind of catastrophe, major or minor, can be avoided, w e should obviously avoid it. W h y w e should draw a line 305
HOOSE where gene therapy is concerned is therefore obvious. Where we should draw the line depends upon our present level of knowledge and understanding and upon the development of safety features. Bearing this in mind, it would seem to m e that, for the time being, w e should draw the line at all forms of gene therapy, except in specific cases that are carefully evaluated in advance. It is worth pointing out, moreover, that experiments on animals should be conducted with extreme caution. Interference in the gene pool of any species could well have repercussions far beyond that particular species. Having thus indicated where I think our line should be drawn, however, let m e repeat that I a m speaking only about the present. In 5 years from n o w the line may be in a very different place with the blessing ofthe present writer. Indeed, if the required increase in knowledge and safety were to come about, it would be quite wrong to prohibit the use of somatic cell gene therapy for people suffering from terminal diseases that were otherwise incurable.
REFERENCES A N D NOTES 1. MCCORMICK, R.A., (1981). Notes on Moral Theology 1965 through 1980. (Lanham, Md.), p. 766. 2. Ibid. 3. A N D E R S O N , W.F., and FLETCHER, J.C, (1980). Gene therapy in human beings: When is it ethical to begin? N. Engl. J. Med. 303, 1293-1297. 4. Anderson warns: "It should be remembered that gene therapy does not remove or correct the defective genes in the recipient: it only adds a normal gene into the genome. It is not now known what the influence of this combination of defective and normal genes may be on the developing embryo. Might the regulatory signals still associated with the non functional genes adversely affect the regulation ofthe exogenous gene during development?'' Anderson, W.F. (1985) Human gene therapy: Scientific and ethical considerations. J. Med. Philos. 10, 286. 5. cf. F R I E D M A N N , T. (1989). Progress toward human gene therapy. Science 244, 1280. 6. A N D E R S O N , W.F. Human gene therapy. , p. 288. 7. Ibid. 8. Quoted in, Trombley, S. (1989). Sir Frederick Treves: The Extra-Ordinary Edwardian. (London) p. 37. Originally in, Treves, S. (1923). The Elephant Man and Other Reminiscences. (Cassell & Co., London). Treves always refers to Merrick as John, but Trombley points out that, according to his birth certificate, his name was Joseph. Apparently, the only parts of Joseph Merrick's body that were normal in appearance were his sexual organs and his left arm. To make matters worse, during his childhood he suffered from a hip disease which left him permanently lame. He was therefore unable to run away from his tormentors, (ibid., p. 38). 9. Ibid., p. 41. 10. Regarding 'more benign forms' of eugenic doctrine, see Chan, C.K. (1987). Eugenics on the rise: A report from Singapore. In Ethics, Reproduction and Genetic Control, R.F. Chadwick (ed.). (London) p. 164-171. 11. The supposed superiority of white Anglo-Saxon Protestants in the United States in the not too distant past was an example of an even more restricted elitism. 12. Cf. SINSHEIMER, R.L., The prospect of designed genetic change. In Ethics, Reproduction and Genetic Control, pp. 144-146. 13. A N D E R S O N , W.F., Human gene therapy , p. 289. 14. FUCHS, J., (1983). The absoluteness of behavioral moral norms. In Personal Responsibility and Christian Morality. (Georgetown University Press, Washington) p. 131. 15. Ibid., p. 141. Address reprint requests to: Bernard Hoose Allington Castle Maidstone Kent, M E 1 6 O N B England Received for publication June 5, 1990; accepted July 3, 1990.
306
