A Rich Bioethics: Public Policy, Biotechnology, and the Kass Council

One: Public Bioethicsand the Birth of the Kass Council

O N E Public Bioethics and the Birth of the Kass Council In his 1784 essay “Answering the Question: What is Enlightenment ?”Immanuel Kant articulated the spirit of the modern era: “Dare to know!” In this aphorism Kant expressed his conviction that deference to the natural order, authority, or received tradition hampers the maturation of humankind. Such servitude shows a lack of courage and a state of immaturity and dependence rather than the fortitude to use one’s own intellect.Accordingly, Kant’s moral philosophy emphasized autonomy, or the capacity of rational individuals to govern themselves independent of their places in a metaphysical or social order. For Kant, the individual rational will is the seat of an impulse to extend the frontiers of knowledge. It is the source of human dignity, and since it is shared by all human beings, it forms the basis for both freedom and justice and, thus, a modern liberal society.1 The daring that Kant spoke of has only one rational limitation. Knowledge may be allowed to transgress the dictates of authority, any belief in a natural order, and any interpretation of divine will. But individual pursuit of knowledge must not violate the autonomy of other persons. Enlightenment is about the pursuit of new knowledge, but this pursuit must respect individual rights, especially to 13 physical well-being and social equality. If these conditions are satisfied, the currently popular reading of Kant holds that people can and should be able to do whatever they choose. In the 1930s in Kant’s homeland, the Nazi regime grew to power. According to Nazi ideology, the seat of human dignity lay not in the universally shared autonomous will, but in the physical characteristics of a certain race. Thus when the Nazi German physician Dr. Josef Mengele prowled the concentration camp at Auschwitz in the mid 1940s,he did not see autonomous individuals deserving of equal respect. Rather, the“Angel of Death,” as the inmates called him, saw a lesser class of beings. Mengele and other Nazi physicians performed atrocious experiments on concentration camp prisoners. The experiments included work on the effects of hypoxia, nerve gas, freezing, high pressure, and the ingestion of sea water. Prisoners were deliberately infected with bacteria in order to test untried compounds for medicinal qualities.Some physicians removed segments of bone, nerves, and other tissues and experimented with transplantations . Prisoners often died as a result of the experiments, or were murdered afterward and dissected. Many experiments were allegedly motivated by the desire to gain knowledge to improve the competitive edge of Nazi soldiers. Following the war, international military courts put on trial twentythree Nazi physicians in what came to be known as the twelve “Doctors’ Trials,” or the “Subsequent Nuremberg Trials.”2 In an appeal to a suprapositive principle transcending the laws of any one nation, the indictments referred to “crimes against humanity,” which are grave affronts to human dignity. Prior to these trials, there were no statutes clearly distinguishing legal from illegal medical practices.Thus one of the key outcomes of the trials was the 1946 Nuremberg Code,3 which sought to define legitimate medical research based on principles such as beneficence, which had long been a central aspect of medical ethics that could be traced back to the Hippocratic Oath of the fourth century BCE. The Nuremberg Code,however,placed primary emphasis on the principle of informed consent, which had not been central to the Hippocratic tradition. Indeed, the first line of the Nuremberg Code reads: “The voluntary consent of the human subject is absolutely essential.” This modern principle for the ethics of human experimentation is grounded in a 14 Rich Public Bioethics and the Kass Council Kantian notion of autonomy—respect for the rights of rational individuals to be self-directed rather than determined by considerations imposed externally.4 The Nuremberg Code led to the adoption of the Declaration of Geneva in 1948 by the World Medical Association (WMA). The WMA also adopted the Declaration of Helsinki in 1964, which outlined a set of ethical precepts and a guide to the protection of human rights in the conduct of experiments. These foundations of bioethics all shared a Kantian focus on autonomy and justice. In addition to the ethics of human-subjects research, emerging biomedical technologies were impacting society in other, equally profound ways. Some notable examples include the era of genomics and molecular biology unleashed by...