Research on the Fetus: The Report of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research
The Ethics of Fetal Research
Few fields of study have grown faster than that which has come to be called—by Americans, anyway—“bioethics.” Bioethics is the study of ethical problems raised by the biological and medical sciences. It is, at least in part, the proliferation of new techniques in these sciences that has led to the growth of bioethics.
Some of the ethical problems arise directly from medical practice: if a severely and hopelessly retarded infant in a state institution contracts pneumonia, should efforts be made to save him? If the heart of a potential organ donor is still beating, though his brain is effectively dead, and further delay will imperil the life of the would-be recipient of the organ, may the organ be removed?
Other contentious issues are connected with research: should we try to gain knowledge that has potentially dangerous misuses, for instance, knowledge about genetic engineering and modifying behavior? Is it ever permissible to conduct research on human beings without their consent?
A third set of issues confronts administrators: should a hospital use its limited funds to buy an artificial kidney machine, thus saving the lives of a small number of identifiable persons, or should it rather set up a free screening service for cervical cancer, which the available statistics tell us will save more lives in the long run?
With so many pressing problems to discuss, it is not surprising that bioethics is growing. Conferences, workshops, and summer schools abound. The University of California now offers an MA in bioethics. An Encyclopedia of Bioethics is scheduled to appear later this year. 1 The Institute of Society, Ethics and the Life Sciences, founded in 1969 at Hastings-on-Hudson, now has an annual budget of close to one million dollars, 80 percent of which comes from government and foundation grants; it publishes the bimonthly Hastings Center Report, and conducts both research and teaching programs.
Yet bioethics is still in its infancy, and its rich diet of foundation grants and government sponsorship has made it a flabby infant rather than a tough adolescent. The recent debate about research on the human fetus provides an illustration of the weaknesses that characterize much of the work in the field.
Although some research on human fetuses had been done prior to the legalization of abortion, the 1973 Supreme Court decision striking down anti-abortion laws brought the issue to the surface. Since 1973 there has been a steady stream of women coming to hospitals for abortions, and it did not take researchers long to realize the possibilities inherent in this situation.
Assume that you have developed a new drug, known to be safe for adults but untested for its effects on the fetus if taken by a pregnant woman. To test the drug on pregnant animals would not give reliable information about humans, since there are variations in drug susceptibility between different species, as the thalidomide case tragically showed. To test the drug on normal pregnant women and then check for deformities when they give birth is out of the question. But if there are women about to undergo abortion, one could give them a drug just prior to the operation and then test the fetus, after abortion, to see if the drug has crossed the placenta. If it has not, it will not harm a developing fetus.
Further research possibilities arise from the fact that some methods of abortion result in the fetus being removed from the uterus intact and still alive. It is possible to keep such a fetus alive for several hours or even a day or two. Studies of the living fetus outside the uterus can yield knowledge not otherwise obtainable about the development of the fetus, and it has been claimed that this could lead to major advances in, for example, detecting and preventing abnormal births, and in saving premature infants. It is this class of research—on the nonviable but still living fetus outside the uterus—that has aroused the greatest feeling among some sections of the public, and has caused the most intense debate among bioethicists; and this is quite proper, because such a fetus lacks even the minimal protection of the presence of its mother.
As a result of public disquiet, Congress in July 1974 declared a moratorium on all research on fetuses until the National Commission for the Protection of Human Subjects could consider the issue and make recommendations. The outcome is the Report and Recommendations, together with a huge Appendix separately published and containing the texts of papers and reports prepared for or reviewed by the commission.
The Appendix shows that the commission received a great deal of advice and information, some straightforwardly factual, some addressing the ethical issues. On factual questions there are reports on the nature and extent of research on fetuses, on the boundary between viable and nonviable fetuses, on the legal issues, on the role of fetal research in medical advances, and on the extent to which women change their minds about having an abortion. There are nine separate papers, by theologians, specialists in bioethics, and philosophers, on ethical issues.
Despite the wide sweep of the factual studies undertaken for the commission there is a notable absence of testimony on one point which is surely significant, though the commission apparently did not think so: whether the previable fetus is conscious or capable of feeling pain. The commission did not ask any expert to deal directly with this question, and consequently the factual studies contain only a few incidental remarks which bear on it. According to one study prepared for the commission, the fetus responds to touch as early as seven weeks; this may, however, be a reflex action. A British government-appointed committee on the use of fetuses in research has stated that the parts of the brain on which consciousness depends are very poorly developed and show no sign of electrical activity in a fetus of less than 300 grams, which is reached around eighteen weeks (this was the weight it used as the boundary for permissible research, since it gave a safe margin against the possibility that the fetus could be viable). Paul Ramsey, in The Ethics of Fetal Research, challenges this assertion, though without supporting his contrary view by any medical references. In the present state of medical knowledge the question remains an open one.
As for its ethical deliberations, the commission appears to have gone about its task in the following manner. Starting with the assumption that the fetus is a human being, which is therefore broadly entitled to the same protection as other human beings, the commission then affirmed the general principle that “manifest risks imposed upon non-consenting subjects cannot be tolerated,” and only research involving minimal or no risk is permissible in such cases. To underline its view, the commission explicitly stated that the fact that a fetus is about to be aborted does not change its status: “the same principles apply whether or not abortion is contemplated.”
Anyone who was engaged in fetal research and had read this far might have begun winding up his project at once; in the following paragraph, however, the commission took back much of what it had just said by telling us that some members were of the opinion that the decision to abort does make a difference, not to the status of the fetus, but to what constitutes “minimal risk.” For instance, it is one thing to administer a drug with unknown long-term effects to a fetus undergoing abortion, and quite a different thing to administer it to a fetus likely to grow into a child. Unable to reach agreement on how to define “minimal risk,” the commission dealt with this problem by recommending that a “national ethical review body” be set up, to which questions of interpretation could be referred.
Finally the commission took a step back toward its earlier position by adding that even if considerations of long-term harm are less important for a nonviable fetus outside the uterus than for a normal fetus, still “considerations of respect for the dignity of the fetus continue to be of paramount importance” and “issues of violation of integrity” are central. Therefore the commission recommended the prohibition of non-therapeutic experiments which would either shorten or lengthen the life of the fetus.
Is the ethical issue really as difficult as the commission has made it appear? I cannot see that it is. If the fetus is going to die anyway, without ever possessing self-awareness or the capacity to make decisions of any kind, the only thing that we can do for it is to ensure that it does not suffer in the time that it remains alive. If there is any possibility that the fetus is suffering, then suffering should be ended by total anesthesia for the remainder of the life of the fetus. So long as this provision is scrupulously observed I cannot see that the commission’s prohibition on shortening or lengthening the life of the fetus can make any difference to the fetus at all.
For those inclined to reject this solution, I suggest the following thought-experiment: suppose that for some reason we can do nothing to save a dog which is dying. There is an experiment we can perform on it before it dies which has reasonable prospects of leading to a significant medical advance. The experiment can be performed under total anesthesia and the dog will die before recovering from the anesthetic. Is there any rational basis for objecting to such an experiment? So long as we are sure the dog will feel nothing, I cannot see any. Nor do I think it makes any difference whether the experiment shortens or prolongs the unconscious animal’s life.
Is there any morally relevant difference between doing this experiment on a dying dog and doing it on a dying human fetus? One difference is that the human parents are more likely to be aware of what is happening than the canine parents. This difference is extrinsic to the comparison of fetus and dog as research subjects in themselves, and I shall consider it shortly. Extrinsic factors apart, though, I cannot find any morally relevant difference that can be defended apart from differences based on specifically religious arguments. It is the dog that is the more intelligent, sensitive, and autonomous being. How could any comparison not unthinkingly prejudiced in favor of our own species attribute greater dignity or integrity to the dying fetus than to the dying dog?
Some might say that we must respect the potential of the fetus to become a fully fledged person. But the biological potential of the fetus becomes irrelevant the moment the decision to abort is irrevocable, for at that moment it is determined that the fetus will never realize its distinctively human potential. Or some might say that just the fact that the fetus is human gives it a special claim to protection. This seems to be the view of both the commission and of Paul Ramsey. Both state that the fetus is human and that this gives it a special claim to protection. Neither questions the basis of this special protection.
Ramsey and the commission, as well as those who testified to the commission, accept without question that research on the fetus is to be undertaken only if there is no “animal work” that could be done to yield the same information. In accepting this they are accepting that thousands of perfectly healthy animals will be subjected to experimentation involving suffering as well as death. They appear to regard this as so obviously preferable to experimenting upon an unconscious fetus that they see no need to give reasons for their choice.
Yet to say that merely being a member of our species entitles a being to special protection, even when the being will never have any of the capacities that are commonly thought to elevate our species above others, is to discriminate on the basis of species alone, a form of discrimination no more defensible than discrimination on the basis of race alone.2
The only possible legitimate basis for giving a dying human fetus greater protection than we give to a dying nonhuman animal is that which arises from the interests of the human parents. While our duties to a dying fetus or animal are satisfied by ensuring that it not suffer, in the case of the dying human fetus we may also have duties to the parents that we are not likely to have in the case of a dying animal. This leads us to the issue of parental consent.
Normally if research is contemplated on a child too young to consent to the experiment, the consent of the parents is needed. This is regarded as protection for the child, since it is assumed that the parents will act in the child’s interest. This assumption becomes dubious, however, in the case of a fetus that the parents have decided to abort. Hence the necessity of obtaining parental consent in these circumstances has been challenged.
The commission takes the view that, notwithstanding the decision to abort, a woman will have some interest in and concern for the fetus, and so her consent should be obtained. By a majority the commission would give the father the right to veto research, though his explicit assent is not required.
Ramsey first condemns as “morally outrageous” the idea of giving a woman who elects to have an abortion for social or economic reasons the role of deciding whether the fetus should be experimented upon. But he ends up recommending that the woman’s consent be sought after all, on the pragmatic ground that if the woman is to give genuine consent she and her physician will have to discuss the condemned fetus itself and not merely the relief of the woman’s condition. Ramsey believes this may lead to a change of mind about the abortion, or if not that, at least to a drastic reduction in the amount of research performed on aborted fetuses. Either outcome would meet with Ramsey’s approval, though this cynical view of the consent requirement scarcely befits the “ethic of principles and not consequences” for which Ramsey claims to stand.
Once we accept that the only interest the aborted fetus has is in not suffering, the question of parental consent becomes soluble too. As long as the prohibition of experiments that could involve suffering is strictly enforced we do not need a parent to act as protector of the fetus, for the fetus has all the protection it needs. This means, of course, that causing a fetus to suffer must not only be prohibited but that all fetal research must be carefully monitored by independent observers. Under such conditions, there would be no need to ask the parents who have decided on abortion to consent on behalf of the fetus.
It is understandable that parents will in many cases be concerned about the fate of the fetus they are delivering into the hands of the medical profession. They may have serious doubts about the researcher’s assurance that the fetus will feel nothing. In view of the demonstrable callousness of some medical researchers toward nonhuman experimental subjects, such doubts may be well founded. Or parents may have deep-seated emotions that go beyond the desire to ensure that the fetus does not suffer—an abhorrence, perhaps, of the whole idea of strangers using their still-living offspring for any purpose at all. Such attitudes may be difficult to justify rationally, but this does not mean that they may be disregarded.
The decision to have an abortion is often difficult, even when it seems the right decision in the circumstances. If either parent is anxious about the prospect of an experiment being performed on the fetus, they should not have this anxiety added to the difficulty of the decision to abort. For the parents’ own peace of mind, their consent should be required in all cases, even though it could be shown that the fetus would not suffer in any way. At the same time, as I have said, no fetal research should be undertaken unless such a showing is made.
We have seen that despite the complication of the consent issue, it is possible to reach plausible conclusions about the limits of ethical research on the fetus without taking the zig-zagging path of the commission or the species-biased and over-restrictive view of Ramsey. The failure of both the commission and Ramsey to reach a clear, coherent position—or even to see any need to justify the special protection they give to the human fetus vis-à-vis “animal models”—is, as I said earlier, an instance of a general weakness in bioethics.
There is a tendency for the ethics in bioethics to be treated superficially.3 That most people regard something as right is often taken as sufficient to show that it is right. This uncritical attitude leads inevitably to confusion and incoherence, for there are several things that most people regard as right which turn out to be incompatible with one another when their full implications are unraveled.
The only proper approach to our ordinary ethical intuitions in bioethical matters is a critical one which does not accept an intuition unless it can be defended on the basis of a more fundamental ethical theory. Unfortunately most of those who decide bioethical issues are ill-equipped to take this approach, since they have no special understanding of ethics or moral philosophy. Consider, for example, the membership of the commission: three doctors, three lawyers, the president of the National Council of Negro Women, an assistant professor of Christian ethics, and a Jesuit who teaches bioethics. Only the last two could be expected to have any special expertise in theoretical ethics, and their views would tend to derive from a religious background.
Thus despite the fact that only a minority of US citizens are churchgoers; despite the constitutional separation of church and state; despite the presence, in every major university in the country, of moral philosophers without special religious affiliations; despite, finally, the fact that these professional philosophers are employed on the basis of their ability to teach and conduct research in ethics—despite all this, there is not a single secular professional philosopher on the commission.
This situation is characteristic of bioethics, which has tended to acquaint doctors, scientists, and lawyers with the work of religious people interested in ethics (like Ramsey, who is a professor of religion at Princeton) rather than with the work of those interested in ethics simpliciter.
To their shame, philosophers themselves bear much of the blame. Throughout the 1950s and into the early 1960s, they proclaimed that moral philosophy was “value free” and that the role of the moral philosopher was quite separate from that of the moralist (the implication being that it was more academically respectable). During this period, discussion of practical issues in ethics went, by default, to religious leaders and those working in religious ethics, who had not abandoned their traditional roles as sources of moral counsel.
The resulting dominance of religious opinion on ethical matters—a dominance that has persisted long after academic moral philosophy has returned to the study of these issues—is a dangerous situation. Bioethics is too important to be left either to those with no background in the handling of ethical concepts and arguments or to those who approach moral issues from a distinctively religious perspective.
Edited by Warren T. Reich and to be published by The Free Press.↩
For further discussion of this point, see my Animal Liberation (A New York Review Book, 1975), chapters one and six.↩
As with any tendency, there are notable exceptions. A recent one is Charles Fried's Medical Experimentation: Personal Integrity and Social Policy (North-Holland Publishing Co., 1974).↩
Edited by Warren T. Reich and to be published by The Free Press.↩
For further discussion of this point, see my Animal Liberation (A New York Review Book, 1975), chapters one and six.↩
As with any tendency, there are notable exceptions. A recent one is Charles Fried’s Medical Experimentation: Personal Integrity and Social Policy (North-Holland Publishing Co., 1974).↩