If we were to approach the issue of life or death for a seriously disabled human infant without any prior discussion of the ethics of killing in general, we might be unable to resolve the conflict between the widely accepted obligation to protect the sanctity of human life and the goal of reducing suffering. Some say that such decisions are “subjective,” or that life-and-death questions must be left to God and nature. Our previous discussions have, however, prepared the ground, and the principles established and applied in the preceding pages make the issue much less baffling than most take it to be.
The fact that a being is a human being, in the sense of a member of the species Homo sapiens, is not relevant to the wrongness of killing it; it is, rather, characteristics like rationality, autonomy, and self-consciousness that make a difference. Infants lack these characteristics. Killing them, therefore, cannot be equated with killing normal human beings, or any other self-conscious beings. This conclusion is not limited to infants who, because of irreversible intellectual disabilities, will never be rational, self-conscious beings. We saw in our discussion of abortion that the potential of a fetus to become a rational, self-conscious being cannot count against killing it at a stage when it lacks these characteristics—not, that is, unless we are also prepared to count the value of rational self-conscious life as a reason against contraception and celibacy. No infant—disabled or not—has as strong a claim to life as beings capable of seeing themselves as distinct entities, existing over time.
The difference between killing disabled and normal infants lies not in any supposed right to life that the latter has and the former lacks, but in other considerations about killing. Most obviously there is the difference that often exists in the attitudes of the parents. The birth of a child is usually a happy event for the parents. They have, nowadays, often planned for the child. The mother has carried it for nine months. From birth, a natural affection begins to bind the parents to it. So one important reason why it is normally a terrible thing to kill an infant is the effect the killing will have on its parents.
It is different when the infant is born with a serious disability. Birth abnormalities vary, of course. Some are trivial and have little effect on the child or its parents, but others turn the normally joyful event of birth into a threat to the happiness of the parents and any other children they may have.
Parents may, with good reason, regret that a disabled child was ever born. In that event the effect that the death of the child will have on its parents can be a reason for, rather than against killing it. Some parents want even the most gravely disabled infant to live as long as possible, and this desire would then be a reason against killing the infant. But what if this is not the case? In the discussion that follows I shall assume that the parents do not want the disabled child to live. I shall also assume that the disability is so serious that—again in contrast to the situation of an unwanted but normal child today—there are no other couples eager to adopt the infant. This is a realistic assumption even in a society in which there is a long waiting list of couples wishing to adopt normal babies. It is true that from time to time cases of infants who are severely disabled and are being allowed to die have reached the courts in a glare of publicity, and this has led to couples’ offering to adopt the child. Unfortunately such offers are the product of the highly publicized dramatic life-and-death situation and do not extend to the less publicized but far more common situations in which parents feel themselves unable to look after a severely disabled child, and the child then languishes in an institution.
Infants are sentient beings who are neither rational nor self-conscious. So if we turn to consider the infants in themselves, independently of the attitudes of their parents, since their species is not relevant to their moral status, the principles that govern the wrongness of killing nonhuman animals who are sentient but not rational or self-conscious must apply here too. As we saw, the most plausible arguments for attributing a right to life to a being apply only if there is some awareness of oneself as a being existing over time, or as a continuing mental self. Nor can respect for autonomy apply where there is no capacity for autonomy. The remaining principles identified in the chapter “What’s Wrong with Killing?” are utilitarian. Hence the quality of life that the infant can be expected to have is important.
One relatively common birth disability is a faulty development of the spine known as spina bifida. Its prevalence varies in different countries, but it can affect as many as one in five hundred live births. In the more severe cases, the child will be permanently paralyzed from the waist down and lack control of bowels or bladder. Often excess fluid accumulates in the brain, a condition known as hydrocephalus, which can result in intellectual disabilities. Though some forms of treatment exist, if the child is badly affected at birth, the paralysis, incontinence, and intellectual disability cannot be overcome.
Some doctors closely connected with children suffering from severe spina bifida believe that the lives of the worst affected children are so miserable that it is wrong to resort to surgery to keep them alive. Published descriptions of the lives of these children support the judgment that they will have lives filled with pain and discomfort. They need repeated major surgery to prevent curvature of the spine, due to the paralysis, and to correct other abnormalities. Some children with spina bifida have had forty major operations before they reach their teenage years.
When the life of an infant will be so miserable as not to be worth living, from the internal perspective of the being who will lead that life, both the “prior existence” and the “total” version of utilitarianism entail that, if there are no “extrinsic” reasons for keeping the infant alive—like the feelings of the parents—it is better that the child should be helped to die without further suffering. A more difficult problem arises—and the convergence between the two views ends—when we consider disabilities that make the child’s life prospects significantly less promising than those of a normal child, but not so bleak as to make the child’s life not worth living. Hemophilia is probably in this category. The hemophiliac lacks the element in normal blood that makes it clot and thus risks prolonged bleeding, especially internal bleeding, from the slightest injury. If allowed to continue, this bleeding leads to permanent crippling and eventually death. The bleeding is very painful, and although improved treatments have eliminated the need for constant blood transfusions, hemophiliacs still have to spend a lot of time in the hospital. They are unable to play most sports and live constantly on the edge of crisis. Nevertheless, hemophiliacs do not appear to spend their time wondering whether to end it all; most find life definitely worth living, despite the difficulties they face.
Given these facts, suppose that a newborn baby is diagnosed as a hemophiliac. The parents, daunted by the prospect of bringing up a child with this condition, are not anxious for him to live. Could euthanasia be defended here? Our first reaction may well be a firm “no,” for the infant can be expected to have a life that is worth living, even if not quite as good as that of a normal baby. The “prior existence” version of utilitarianism supports this judgment. The infant exists. His life can be expected to contain a positive balance of happiness over misery. To kill him would deprive him of this positive balance of happiness. Therefore it would be wrong.
On the “total” version of utilitarianism, however, we cannot reach a decision on the basis of this information alone. The total view makes it necessary to ask whether the death of the hemophiliac infant would lead to the creation of another being who would not otherwise have existed. In other words, if the hemophiliac child is killed, will his parents have another child whom they would not have if the hemophiliac child lives? If they would, is the second child likely to have a better life than the one killed?
Often it will be possible to answer both these questions affirmatively. A woman may plan to have two children. If one dies while she is of child-bearing age, she may conceive another in its place. Suppose a woman planning to have two children has one normal child and then gives birth to a hemophiliac child. The burden of caring for that child may make it impossible for her to cope with a third child; but if the disabled child were to die, she would have another. It is also plausible to suppose that the prospects of a happy life are better for a normal child than for a hemophiliac.
When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed. The loss of happy life for the first infant is outweighed by the gain of a happier life for the second. Therefore, if killing the hemophiliac infant has no adverse effect on others, it would, according to the total view, be right to kill him.
The total view treats infants as replaceable. Many will think that the replaceability argument cannot be applied to human infants. The direct killing of even the most hopelessly disabled infant is still officially regarded as murder; how then could the killing of infants with far less serious problems, like hemophilia, be accepted? Yet on further reflection, the implications of the replaceability argument do not seem quite so bizarre. For there are disabled members of our species whom we now deal with exactly as the argument suggests we should. These cases closely resemble the ones we have been discussing. There is only one difference, and that is a difference of timing—the timing of the discovery of the problem, and the consequent killing of the disabled being.
Prenatal diagnosis is now a routine procedure for pregnant women. There are various medical techniques for obtaining information about the fetus during the early months of pregnancy. At one stage in the development of these procedures, it was possible to discover the sex of the fetus, but not whether the fetus would suffer from hemophilia. Hemophilia is a sex-linked genetic defect, from which only males suffer; females can carry the gene and pass it on to their male offspring without themselves being affected. So a woman who knew that she carried the gene for hemophilia could, at that stage, avoid giving birth to a hemophiliac child only by finding out the sex of the fetus and aborting all male fetuses. Statistically, only half of these male children of women who carried the defective gene would have suffered from hemophilia, but there was then no way to find out to which half a particular fetus belonged. Therefore twice as many fetuses were being killed as necessary, in order to avoid the birth of children with hemophilia. This practice was widespread in many countries and yet did not cause any great outcry. Now that we have techniques for identifying hemophilia before birth, we can be more selective, but the principle is the same: women are offered, and usually accept, abortions in order to avoid giving birth to children with hemophilia.
The same can be said about some other conditions that can be detected before birth. Down syndrome, formerly known as mongolism, is one of these. Children with this condition have intellectual disabilities and most will never be able to live independently, but their lives, like those of small children, can be joyful. The risk of having a child with Down syndrome increases sharply with the age of the mother, and for this reason prenatal diagnosis is routinely offered to pregnant women over 35. Again, undergoing the procedure implies that if the test for Down syndrome is positive, the woman will consider aborting the fetus and, if she still wishes to have another child, will start another pregnancy, which has a good chance of being normal.
Prenatal diagnosis, followed by abortion in selected cases, is common practice in countries with liberal abortion laws and advanced medical techniques. I think this is as it should be. As the arguments of the chapter “Taking Life: The Embryo and the Fetus” indicate, I believe that abortion can be justified. Note, however, that neither hemophilia nor Down syndrome is so crippling as to make life not worth living, from the inner perspective of the person with the condition. To abort a fetus with one of these disabilities, intending to have another child who will not be disabled, is to treat fetuses as interchangeable or replaceable. If the mother has previously decided to have a certain number of children, say two, then what she is doing, in effect, is rejecting one potential child in favor of another. She could, in defense of her actions, say: the loss of life of the aborted fetus is outweighed by the gain of a better life for the normal child who will be conceived only if the disabled one dies.
When death occurs before birth, replaceability does not conflict with generally accepted moral convictions. That a fetus is known to be disabled is widely accepted as a ground for abortion. Yet in discussing abortion, we saw that birth does not mark a morally significant dividing line. I cannot see how one could defend the view that fetuses may be “replaced” before birth, but newborn infants may not be. Nor is there any other point, such as viability, that does a better job of dividing the fetus from the infant. Self-consciousness, which could provide a basis for holding that it is wrong to kill one being and replace it with another, is not to be found in either the fetus or the newborn infant. Neither the fetus nor the newborn infant is an individual capable of regarding itself as a distinct entity with a life of its own to lead, and it is only for newborn infants, or for still earlier stages of human life, that replaceability should be considered to be an ethically acceptable option.
It may still be objected that to replace either a fetus or a newborn infant is wrong because it suggests to disabled people living today that their lives are less worth living than the lives of people who are not disabled. Yet it is surely flying in the face of reality to deny that, on average, this is so. That is the only way to make sense of actions that we all take for granted. Recall thalidomide; this drug, when taken by pregnant women, caused many children to be born without arms or legs. Once the cause of the abnormal births was discovered, the drug was taken off the market, and the company responsible had to pay compensation. If we really believed that there is no reason to think of the life of a disabled person as likely to be any worse than that of a normal person, we would not have regarded this as a tragedy. No compensation would have been sought, or awarded by the courts. The children would merely have been “different.” We could even have left the drug on the market, so that women who found it a useful sleeping pill during pregnancy could continue to take it. If this sounds grotesque, that is only because we are all in no doubt at all that it is better to be born with limbs than without them. To believe this involves no disrespect at all for those who are lacking limbs; it simply recognizes the reality of the difficulties they face.
In any case, the position taken here does not imply that it would be better that no people born with severe disabilities should survive; it implies only that the parents of such infants should be able to make this decision. Nor does this imply lack of respect or equal consideration for people with disabilities who are now living their own lives in accordance with their own wishes. The principle of equal consideration of interests rejects any discounting of the interests of people on grounds of disability (see “All Animals Are Equal”).
Even those who reject abortion and the idea that the fetus is replaceable are likely to regard possible people as replaceable. Suppose a woman is planning to become pregnant. She is told by her doctor that if she goes ahead with her plan to become pregnant immediately, her child will have hemophilia; but if she waits three months her child will be normal. If we think she would do wrong not to wait, it can only be because we are comparing the two possible lives and judging one to have better prospects than the other. Of course, at this stage no life has begun; but the question is, when does a life, in the morally significant sense, really begin? In earlier chapters we saw several reasons for saying that life begins in the morally significant sense only when there is awareness of one’s existence over time.
Regarding newborn infants as replaceable, as we now regard fetuses, would have considerable advantages over prenatal diagnosis followed by abortion. Prenatal diagnosis still cannot detect all major disabilities. Some disabilities, in fact, are not present before birth; they may be the result of extremely premature birth or of something going wrong in the birth process itself. At present parents can choose to keep or destroy their disabled offspring only if the disability happens to be detected during pregnancy. There is no logical basis for restricting parents’ choice to these particular disabilities. If disabled newborn infants were not regarded as having a right to life until, say, a week or a month after birth it would allow parents, in consultation with their doctors, to choose on the basis of far greater knowledge of the infant’s condition than is possible before birth.
All these remarks have been concerned with the wrongness of ending the life of the infant, considered in itself rather than for its effects on others. When we take effects on others into account, the picture may alter. Obviously, to go through the whole of pregnancy and labor, only to give birth to a child who one decides should not live, would be a difficult, perhaps heartbreaking, experience. For this reason many women would prefer prenatal diagnosis and abortion rather than live birth with the possibility of infanticide; but if the latter is not morally worse than the former, this would seem to be a choice that the woman herself should be allowed to make.
Another factor to take into account is the possibility of adoption. When there are more couples wishing to adopt than normal children available for adoption, a childless couple may be prepared to adopt a hemophiliac. This would relieve the mother of the burden of bringing up a hemophiliac child and enable her to have another child, if she wished. Then the replaceability argument could not justify infanticide, for bringing the other child into existence would not be dependent on the death of the hemophiliac. The death of the hemophiliac would then be a straightforward loss of a life of positive quality, not outweighed by the creation of another being with a better life.
So the issue of ending life for disabled newborn infants is not without complications, which we do not have the space to discuss adequately. Nevertheless the main point is clear: killing a disabled infant is not morally equivalent to killing a person. Very often it is not wrong at all.