Testimony before the House Government Reform Subcommittee on Criminal Justice, Drug Policy and Human Resources by C. Christopher Hook, MD

Date: 07/17/2001

July 17, 2001

Dr. Hook’s comments are his own and do not necessarily reflect the views of the Mayo Foundation. He is presenting in his roles as a Senior Fellow of The Center for Bioethics & Human Dignity, a member of the Christian Medical Association’s Ethics Commission, a co-founding member of Do No Harm: The Coalition of American’s for Research Ethics and as a private citizen.

Mr. Chairman and Members of the Subcommittee:

Thank you for the opportunity to participate in this hearing concerning one of the most important questions facing this government and country today. The issue of embryonic stem cell research places before us critical choices that will decide the nature and soul of our Republic for years to come. The questions before us are these: As a society, are we willing to devalue and commodify members of our human family? Are we willing to violate principles of human subject research that have arisen out of the ashes of atrocities committed here and abroad under circumstances where other members of the human community have been devalued and commodified using utilitarian logic, precisely as is occurring again in the debate on living human embryo research? Are we willing to transform our concept of proxy for medical care into a license to kill by allowing genetic parents to abandon their living human embryos to fatal medical experimentation under the pretense of giving their “informed consent”? Are we willing to set the precedent that the promise, not proof, of future medical treatments for third party patients is sufficient to justify the destruction of living human beings?

Human subject research has provided many wonderful treatments to patients over the past 200 years. However, the history of human research is checkered with horrible abuses, including the Tuskegee syphilis trial and the Willowbrook hepatitis experiments here in the United States, and the experiments performed at Dachau during the Second World War. During the Nuremberg war crime trials, conducted at the conclusion of World War II, German researchers on trial defended themselves on the following grounds: (1) a great need allegedly existed for the research to save the lives of soldiers and sailors; (2) the subjects of the experiments were purportedly already targeted to die (i.e., German researchers alleged that someone else made the decision to kill them); therefore, (3) we should not let this valuable commodity, this chance to learn in ways we otherwise could not, be wasted. This argument, resoundingly rejected by the tribunal, is precisely the same argument put forward today to justify using government funds to conduct research on human embryos. The only difference is that we have substituted human embryos as the group of devalued, commodified human beings who are to be sacrificed on the altar of research and supposed progress.

One of the products of the Nuremberg trials was the Nuremberg Code of Research Ethics. The Code was created with the hope that the research community would not repeat the mistakes in Germany. Indeed, it is interesting that Germany, the country with the most horrific experience with fatal human subject experimentation, today bars not only the destruction of living human embryos for research purposes, but also the freezing of human embryos because of the high associated death rate (11-50% death rate at thawing). The Nuremberg Code of Research Ethics has served as the foundation of all subsequent statements governing human subject research. Section 5 of the Code states, “No experiment should be conducted where there is an a priori reason [i.e., prospective reason] to believe that death or disabling injury will occur; except perhaps, in those experiments where the experimental physicians also serve as subjects.”

In 1949, Dr. Leo Alexander, one of the participants in the Nuremberg trials, recorded his observations and the lessons he hoped we would learn from the Dachau tragedy in the New England Journal of Medicine [Volume 241: 39-47, July 14, 1949]. One of his comments is particularly pertinent to this discussion:

The case, therefore, that I should like to make is that American medicine must realize where it stands in its fundamental premises. There can be no doubt that in a subtle way the Hegelian premise of “what is useful is right” has infected society, including the medical profession. Physicians must return to the older premises, which were the emotional foundation and driving force of an amazingly successful quest to increase powers of healing and which are bound to carry them still further if they are not held down to earth by the pernicious attitudes of an overdone practical realism.

It is ironic that as the generation that protected us from the expansion of reductionistic, utilitarian arguments leading to the dehumanization of fellow human beings passes away, we are abandoning the principles for which it fought and the lessons it painfully learned.

A subsequent international document governing human subject research is the Declaration of Helsinki of the World Medical Association. It states in the section on Basic Principles, “Concern for the interests of the subject must always prevail over the interests of science and society.” Concerning non-therapeutic biomedical research, the Declaration adds, “In the purely scientific application of medical research carried out on a human being, it is the duty of the doctor to remain the protector of the life and health of that person on whom biomedical research is being carried out.” The even more contemporary European Union Convention on Human Rights and Dignity of the Human Being (1997) states, “The interests and welfare of the human being shall prevail over the sole interest of society and science.”

The bottom line of all of these statements is that to prevent abuses and protect all human beings, strict limits must be placed on medical research. There are certain lines that must never be crossed. Research that directly and explicitly will lead to the death of the subject is, and should be, completely forbidden. The protection of the individual human subject must outweigh any interests society asserts in performing experimentation on her.

It comes down to this fundamental question: Is the human embryo a human being whose research protocols ought to be governed by ordinary medical ethical rules? She is. The human embryo is a person in an early phase of maturation through which everyone of us passed. She is not some other species. She is not merely tissue. Tissue cannot continue to develop into a full adult human being, unless acted upon by extreme laboratory manipulations which are still of uncertain feasibility.

Dehumanizing the embryo is a form of agism, or age-based discrimination. All of the many attempts to use some developmental milestone beyond fertilization as the point at which a human being is finally recognized as a human being have been arbitrary, subjective and proposed by those who want to do something to or with the individual in question. That last fact, alone, should disqualify these subjective and self-serving attempts to define away each genetically unique human being’s humanity. Once a genetically unique individual exists at fertilization, she is human and she is a being; she is a human being and protected by the rules of human subject research. Even if one wishes to say that we, as a society, are not certain about the nature of the human embryo — a supposed “agnostic” stance — then we are still compelled to provide the same protections to her that we apply to other human beings, because there is still the significant possibility that the embryo is a human being. To choose otherwise is to say that we do not have to be sure that we are not destroying human beings or, in essence, that it is permissible to destroy human beings for utilitarian purposes.

Because living human embryos are human beings whose participation in research should be governed by traditional codes of human subject research ethics, the current proposal to destroy them raises additional concerns. Among these is the issue of informed consent. The Nuremberg Code, the Declaration of Helsinki, the Belmont Commission Report and the U.S. Code of Federal Regulations mandate that prospective subjects of biomedical research provide informed consent prior to participation in research. The post-Nuremberg codes allow that, in cases where the prospective subject cannot provide informed consent, a proxy may provide it. However, they require that the research have therapeutic value to the subject, or, if not of therapeutic value, the information cannot possibly be obtained via other means. In all cases, direct harm or death to the individual is forbidden, or the harms incurred must be significantly less than the potential benefits to the subject.

Clearly, the proposed research that leads to the death of the individual embryonic human being is not therapeutic and violates the prohibition against disproportionate harm. Most importantly, no proxy can authorize the death of a ward through participation in research. Proxies must always act in the best interests of the ward. Any proxy that would authorize the deliberate killing of a ward is in breach of his or her responsibility and has relinquished any right to serve in the capacity of a proxy. Any system, such as the NIH Guidelines, that would allow a proxy to consent to the deliberate killing of the ward is in violation of all codes of human subject research. Parents who would choose death for the children they deliberately conceive, rather than pursue the available and responsible option of giving the children to others via adoption, have violated their parental responsibility. Our government should not participate in this tragedy at all and particularly not by capitalizing or permitting others to capitalize from such gross irresponsibility.

Another classic principle of human subject research is that we should pursue knowledge using the least dangerous or damaging approach feasible. The ostensible therapeutic goals of human embryonic stem cell research can be pursued via methods that do not lead to the destruction of human life. It is ethically mandatory that adult stem cell research be pursued to its conclusion before research threatening the life of a human being is considered. In addition, human subject research should always be preceded by sufficient animal model research to justify the research on humans. Research on animals using stem cells has just begun. Therefore, it is far too early to know what embryonic stem cells can or cannot do, both for good and harm. We have no business destroying human beings for research when our animal studies are still in their embryonic phases.

As a final matter, hearings in Washington recently revealed that other countries harvest the organs of individuals condemned by the death penalty. All civilized nations find this practice repugnant. Yet the perpetrators of these crimes against humanity employ the same “stewardship” logic used by proponents of destructive embryonic stem cell research. We cannot with any sense of good faith decry the commodification by other countries of human beings, yet turn around and engage in precisely the same behavior against another target group of humans: embryos.

We dehumanize the immature members of the human family at great risk. If we can define away others’ humanity, in the end, none of us is safe. This sort of thing may take place elsewhere, but it should never happen in the United States of America.

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