The Medical Research Council of Canada (MRC) has issued a revised code of ethics. Guidelines on Research Involving Human Subjects, released in late February, is the culmination of more than three years of committee work, professional discussions and briefs from the public. These Guidelines supersede the ones governing experiments with human subjects issued in 1978. In the future, the MRC expects all medical research it funds to comply with its new code.
The MRC “holds that the highest possible sensitivity and moral standards must be applied to all research.” Is this high ideal reflected in the Guidelines themselves? In many places, yes – particularly on the matter of consent, they are careful to ensure that the human subjects of sometimes – risky experiments know about and agree to what is involved. Though the authors admit that fully free and informed consent is rarely attained, nevertheless they provide the means whereby the rights, the liberty and the dignity of subjects is protected.
Consent obtained by coercion – even of the subtlest kind – must be avoided at all costs, the Guidelines warn. Consent merely begins with the signing of a document, and must be continuously elicited from the subject through an “educative effort.” And consent, the Guidelines stress, is not a binding contract: “Subjects…may leave the study at any time without prejudice to their rights, and they must be free to do so.”
This awareness of the rights of the human subject of medical research arises from the ethical philosophy of the Guidelines themselves:
”The philosophy of liberalism rests on a number of principles. Foremost among these is the primacy of individuals, their freedom and their right to be left alone. This respect for persons led to the rise of the concept of autonomy.”
Only an autonomous and free individual can (as far as he is able) give true and unfettered consent to medical experiments which may invade his privacy or violate his person.
The philosophical bias of the Guidelines determines their ideal subject of research. He is an adult who can exercise a large measure of personal freedom. He has the power to decide whether the risks of research are worth enduring. He may suffer a “loss of dignity and self-esteem as a result of his participation in medical experiments. He may be afflicted with “guilt and remorse, feelings of exploitation and degradation” but he has accepted all these things as a consequence of what was permitted him in the first place – his right to consent to the researcher’s request. If he is deceived or coerced or manipulated into participating in de-humanizing medical research, he can defend his aggrieved rights in a court of law (and stand a fair chance of being vindicated).
Given liberalism’s restricted definition of what constitutes the human person, it is not surprising that the MRC Guidelines cannot accord to the pre born subjects of research the same elaborate safeguards given to adults. The legal status of fetuses and embryos is, according to the Guidelines, “not well defined.” Consent and autonomy – the MRC’s litmus test of full humanity – cannot be applied to them, since they cannot speak for themselves concerning their participation in medical research. Embryos and fetuses, grant the Guidelines, are “human life forms” and so merit a measure of ethical commitment, but not absolute commitment. They are not yet free, independent or rational.
Thus, what is strength in the new medical Guidelines becomes, when the issue of research on pre-born human beings arises, a glaring and terrible weakness. The authors thinking on the coming to be of the human person is on two counts, seriously inadequate.
First, they have adopted the view that the addition of a special characteristic to the developing human being elevates him to full personhood, and to full respect from science. That characteristic is personal autonomy. True humanity, believe the authors of the Guidelines, emerges only when a human being is capable of person autonomy. Thus, “separated tissue (i.e., abortuses)…may be regarded as routine pathological tissue, and may be used in research.”
Second, they have accepted a gradualist view of human development. At first, the organism has no human traits. As the embryo becomes a fetus, however, it acquires these traits until it is a completed person. During this process of accumulating human traits, the pre-born child is human in only a partial sense. It can, therefore, be subjected to technological and legal interventions that would not be considered whatsoever in the case of a person who had attained full humanity. At no point in all the MRC’s discussion of research on embryos and fetuses in the matter of consent ever raised! Since they have yet to develop the faculties of thought and verbal expression, there is little point in consulting them – or their parents.
“The human embryo,” states the Guidelines, “is no less a unique human life form than a fetus and warrants a high order of respect.” On the face of it, this seems to offer some hope for the survival of civilized values in Canadian medical research. But when it is compared with what the MRC actually designates as licit in research with embryos, a different picture emerges.
Embryos up to 17 days gestation ought to be used for research so that the mechanism of implantation in the womb can be studied. Since all embryos cannot be implanted, the MRC Guidelines clearly envisage the destruction of the surplus.
Restraints on embryo research are unethical. Procedures such as in vitro fertilization and embryo freezing (both of which result in spare embryos, rather like spare parts) need improvement.
The MRC “sees a broad prohibition of all research on embryos as neither justified nor wise.” The reasons: research, which has the intention of good for others may be thwarted. Thus the person who in the eyes of the MRC is a strange mix of human being and biological tissue is reduced is worth to a pure and simple instrument.
By the authors’ own admission, the directions governing research on human fetuses and embryos are open-ended. “In time, with the evolution of social and ethical values and further scientific development…investigators might contemplate other embryo research.” Presumably, some years hence, a new set of Guidelines from the MRC will justify further scientific violence to the pre-born. This ethical gradualism is the mirror image of the MRC’s biological gradualism:
“Ethics are principles of right conduct, guiding what ought to be done. Although they may reflect enduring moral values, ethics are not static but evolve with time and public perception.”
Dr. Harley S. Smyth (“Motive and Meaning in Medical Morals”) makes the important distinction between ethics and etiquette. In the classical sense, he writes, ethics comprises “judgments of value as to the rightness or wrongness, the goodness or badness, the virtue or vice, the wisdom or folly, and means and end of an action.” Etiquette, on the contrary, deals with what is appropriate and acceptable in contemporary society. It is time-bound phenomenon, changing with the evolution of moral feeling in our society. For the time being, driven by the efforts of special interest groups, moral feeling is moving to the thought that human beings (especially those who lack the power of consent) can be manipulated and dominated for their good or someone else’s.
Though the MRC’s Guidelines continue to draw on classical ethics (with their utmost respect for all human life), it rules governing research on human fetuses and embryos indicates that a utilitarian view of human life is poised for a final takeover. What are the consequences of this?
In the Netherlands, vociferous physicians’ groups are demanding – and frequently obtaining – the right to engage in active euthanasia. The Dutch judiciary has so far failed to punish the doctors who, by conservative estimates, are ending the lives of 10,000 aged and suffering people each year.
An American doctor believes (in the 1986 edition of the journal, Medicine & Law) that all codes and medical ethics – including, presumably, the one issued by the MRC – completely ignore “the extraordinary opportunities for terminal experimentation on humans facing imminent and inevitable death.”
Ironically, the authors of the MRC code itself address the foreseeable consequences:
“The most shocking was the revelation at Nuremberg of the research atrocities conducted under Hitler on unwilling captives during World War II. This led to the Nuremberg Code which emphasized respect for persons and the importance of voluntary informed consent.”
