We extend special thanks to Robyn S. Shapiro, Human Rights editorial board member, for her assistance as special issue editor of this edition discussing body rights and body ethics.
Law is the dominant force behind American medical ethics, and has been for at least the past half-century. That lawyers and judges, rather than physicians, have set the agenda for medical ethics in the United States is a bit surprising to many in the field of medical ethics, but it should not be. Medicine has historically been based on paternalism. The Hippocratic physician was obligated to act in the best interests of the patient-as the physician judged those interests-and to “do no harm.” American law, on the other hand, is based on liberty and justice, principles that, among other things, led to the law’s adoption of the doctrine of informed consent-better termed informed choice-under which individuals make the ultimate decision about what, if anything, will be done to their bodies. All of the articles in this issue make that central point from a remarkable variety of perspectives.
The question of when the law assumed the dominant role in defining ethical medical practice can be debated, but my nomination is at the “Doctors’ Trial” at Nuremberg. The end of World War II was marked by the birth of the international human rights movement, the formation of the United Nations, and the adoption of the Universal Declaration of Human Rights. The “Doctors’ Trial” was an important piece of this picture. U.S. judges, presiding under military jurisdiction in Nuremberg, Germany, found fifteen Nazi physicians guilty of war crimes and crimes against humanity for their actions in conducting or authorizing lethal and torturous medical experiments on concentration camp inmates. More importantly, the court articulated what has come to be called the Nuremberg Code, which sets forth the legal requirements for human experimentation. The most significant provision is the first of ten: “The voluntary consent of the human subject is absolutely essential . . . the person involved should have the legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without intervention of any element of force, fraud, deceit, duress, overreaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. . . “
The 1948 Universal Declaration of Human Rights (UDHR) declares bodily integrity central to both human rights and human dignity, providing in Article 5, for example, that “No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.” Most physicians, of course, do not view human experimentation as torture, but the treaty that followed the declaration, the International Covenant on Civil and Political Rights, made the link unmistakable by adding an additional sentence to the UDHR’s Article 5 in its Article 7: “No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected without his free consent to medical or scientific experimentation.” This is, of course, now a fundamental precept of international human rights law. Moreover, under the treaty, Article 7 is nonderogable, even “in time of public emergency which threatens the life of the nation.”
In the United States, our courts later adopted and applied the doctrine of informed consent to the therapeutic as well as the research setting, reversing the Hippocratic ethic by placing choice in the hands of patients rather than physicians. As pivotal as the doctrine of informed choice is now to both law and medical ethics, its application in some circumstances remains contested, as Robyn S. Shapiro discusses in her overview of the controversy surrounding the payment of living donors for solid organs. Lawyers continue to be called upon to advocate for their clients whose right to bodily integrity has been ignored or abused. Moreover, physicians sometimes have affirmative obligations to act to help their patients that reliance on informed consent alone cannot resolve. Kathryn L. Tucker, for example, accurately describes the epidemic of untreated pain as a “human rights tragedy.” She could as accurately have described physicians’ failure to treat their patients’ pain and suffering as torture. It is a scandal that the medical profession ignores such widespread suffering, and it will likely take vigorous legal action to change medical practice in this realm. Similarly, Shawna L. Parks correctly notes that institutionalizing juvenile offenders should require that they be provided basic mental health care. Susan Berke Fogel and Lourdes A. Rivera demonstrate how religious guidelines can frustrate and prevent good medical care, and why lawyers should insist that when the two are in conflict, “the medical needs of the patient must prevail.”
Looking at informed consent directly, Stephen F. Hanlon and Robyn S. Shapiro argue persuasively that there is more at stake in human experimentation than physical injury: such experimentation without consent is also an affront to human dignity, and courts should recognize a dignitary harm even in the absence of physical harm when informed consent is not obtained. The Nazis showed us the extreme physicians could go to in the service of the state. Kathy Swedlow helps us understand that when physicians act as agents of the state to involuntarily medicate a death row inmate so that person (certainly not a “patient”) can be executed, the drugging can meet neither the legal requirement of informed consent nor the Hippocratic injunction to “do no harm.” And Thomas May reminds us that soldiers are people too. Although soldiers may relinquish their right to refuse medical treatment upon enlisting, they retain, as all humans do, their right to refuse to be subjects of human experiments-and so retain their right to refuse experimental or investigational drugs and vaccines, even in wartime. The Nuremberg Code is, after all, a wartime document and made no exceptions for informed consent for either war or the soldiers assigned to fight it.
It should go without saying (but, of course, it doesn’t) that civilians retain all of their rights to bodily integrity, even during war and times of domestic emergencies, and that under no circumstances should civilians be subjected to forced vaccination or other bodily invasions-even those deemed “necessary” by military, medical, or public health officials. Human rights lawyers should resist current proposals to grant public health officials the power over the bodies of civilians during a bioterrorist attack or other public emergency. Such proposals are not only destructive of basic human rights, they are counterproductive in that they replace a medical and public health system based on truthful communication and trust with one based on fear and arbitrary power. Terrorism by others is no excuse for torture by us.
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