Judging the Past: How History Should Inform Bioethics
Discussions of past scandals have become an obligatory part of bioethics courses in undergraduate, graduate, medical, and other health professional schools, and with good reason. These events involved inappropriate and even repugnant behaviors against vulnerable populations, such as minorities, poor persons, and persons with disabilities. By teaching about these controversies, we seek to avoid such behaviors in the future. Students also learn about the efforts to address past abuses, such as the publication of the Belmont Report in 1979 and the establishment of institutional review boards by U.S. federal law in 1991. However, an approach that criticizes historical figures for their mistakes and assumes that past problems have been rectified risks oversimplifying a more complicated reality. Rather, the best scholarship seeks to historicize earlier events, placing them in their historical context and asking why and how they occurred. In doing so, a richer, more instructive assessment of immoral behaviors may be generated. As evidenced by the recent debates about whether to eliminate memorials to Thomas Jefferson, Woodrow Wilson, and other historical figures who advocated slavery or Jim Crow laws (1) this is not an easy task. The very language that is used to describe those who performed the unethical acts and those who received them, such as perpetrators and victims, may introduce value judgments that create reader bias. These pitfalls may be surmounted by returning to the historical eras in question, learning why these behaviors were inappropriate at the time and why they were nevertheless allowed to occur. There is no excuse for whitewashing the horrors of the past, but simply condemning them without seeking an understanding risks making the past seem alien and irrelevant and implies that the present is morally enlightened and invulnerable. This paper revisits several scandals that are typically discussed in bioethics education and training to generate a more historically informed assessment of immoral behavior. How Bioethics Is Taught Many bioethics courses begin with the following quote from the 19th century French physiologist Claude Bernard: The principle of medical and surgical morality consists in never performing on man an experiment which might be harmful to him to any extent, even though the result might be highly advantageous to science, i.e. to the health of others (2) The courses then document instances in which scientists have violated this ethical stance. Examples may include Hideyo Noguchi's syphilis experiments on orphans (1911 to 1912) Joseph Goldberger's pellagra study on prisoners (1915) the Tuskegee syphilis experiment on poor, African American men (1932 to 1972) lobotomy to treat mental illness (1935 to 1967) the human radiation experiments (1944 to 1974) injection of hepatitis virus into children with developmental disabilities at the Willowbrook State School (Staten Island, New York) (1956 to 1970) and injection of cancer cells into sick patients without cancer at the Jewish Chronic Disease Hospital (Brooklyn, New York) (1963) (37) The human experiments done by the Nazis during the Holocaust (8, 9) which led to the development of the Nuremberg Code, are usually also discussed. The code, which was drafted in 1947, underscored Bernard's point and insisted that no research could be ethically done without the participant's voluntary consent. As the historian Susan Lederer has shown (5) investigators had conveniently ignored Bernard and other similar entreaties before World War II, often abetted by superintendents of institutions who gave permission for research. The decision of researchers to bypass the Nuremberg Code (which they did throughout the 1950s and 1960s) was an even more blatant violation of ethical norms. Standard historical assessments of bioethics also discuss the events that occurred in response. Accounts often begin with Henry Beecher's seminal 1966 article in New England Journal of Medicine (10) which identified ethically questionable scientific research being published in first rate medical journals after World War II. Although Beecher did not name names, major medical centers were clearly allowing investigators to conduct studies without obtaining informed consent. The public outcry over the revelations about the Tuskegee syphilis study was next, thanks to a 1972 newspaper expos. This scandal led to the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, which issued the famous Belmont Report in 1979 and the 3 following ethical principles designed to prevent future calamities: respect for persons, beneficence, and justice. Meanwhile, by the late 1960s, precursors of modern institutional review boards were becoming a mandatory part of the research approval process. These committees at both local institutions and larger organizations, such as the National Cancer Institute and the U.S. Food and Drug Administration, comprise researchers, clinicians, bioethicists, and laypersons. They have formally reviewed proposals for appropriate ethical criteria and adequate informed consent for more than 3 decades. How History Can Inform This historical timeline is accurate but too simplistic. It delineates events out of the bad old past and then indicates the subsequent developments intended to ensure that they do not recur. This type of history has been characterized as melodrama, filled with moral outrage aimed at stock assumptions (11) Typical assumptions might include, How could people have been so misguided as to have tolerated such abuses? and We are too morally sophisticated to let 'X' happen again. Indeed, those teaching or writing about the history of bioethics may come under fire if they construct a more complex narrative that does not conform to a politically correct condemnation of what occurred (12) Medical journals may be reluctant to publish articles that do not draw sharp enough distinctions between past evil figures and modern investigators (13) It is far more fruitful, according to historian Martin Pernick, to use history to recreate the past and thus understand the values and motives that characterized earlier eras (14) What was the historical context in which these questionable behaviors occurred? That is, why did they happen? How did researchers understand their actions at the time? What, if any, criticisms occurred during these events, and what was the response of those who were accused? We can use history to provide answers to these questions; we can explain but not exculpate. Thus, although the Tuskegee study is a blatant example of racism (6, 15, 16) and the Willowbrook study demonstrates the dehumanizing of children with mental disabilities (17) historical factors help explain these and other ethical transgressions. Factors include the zealous pursuit of scientific knowledge, concerns about national security, and the opportunity for personal advancement by physicians and other investigators. Lobotomy is a good first example of the value of historical context. Physicians who staffed mental institutions before and after World War II performed tens of thousands of invasive procedures that involved the purposeful damaging of brain tissue to treat psychosis and other mental disorders. Patients often wound up docile, apathetic [and] indifferent (3) stripped of their personalities and dependent on others for the remainder of their lives. However, historians have shown how, before the availability of antipsychotic medications, lobotomies represented the best science of the day and were often used as the last resort for persons whose lives were miserable. Lobotomies also enabled these institutions to maintain order, helping the staff to provide better care despite overcrowded and chaotic conditions (18) From 1944 to 1974, the U.S. government conducted approximately 4000 experiments that involved deliberate exposure to radiation (4) Many of these persons were hospitalized for chronic conditions and received injections of plutonium or other radioactive material without being told what the syringes contained or that they were part of an experiment (4) Physician researchers also gave total body irradiation to patients with cancer, exposed prisoners' testicles to radiation, and fed radioactive oatmeal to institutionalized children with mental disabilities. All of these experiments were done with either no or minimal informed consent, which means that the participants (or, in the case of children, their parents) did not understand the experiments. When a reporter revealed these studies to the public in 1993 (19) there was understandable outrage. President Bill Clinton created the Advisory Committee on Human Radiation Experiments, which issued a nearly 1000 page, highly critical report that charged investigators with violating basic moral principles (4) Clinton appropriately issued a formal apology to the survivors and their families. When the government does wrong, he stated, we have a moral responsibility to admit it (20) At the same time, the committee paid close attention to historical context. Of note, it emphasized the pervasive fears of civilization ending atomic warfare that characterized the Cold War years, in which the United States competed with the Soviet Union for world domination. This mindset promoted, as had World War II, a utilitarian ethos that justified using living bodies to gain scientific knowledge that was deemed critical for national survival. Researchers believed that if soldiers were giving their lives on the battlefield, ordinary citizens should also be expected to make some sacrifices. The committee wrote, The country had to know as much as it could, as quickly as it could, about the effects of radiation and the treatment of radiation injury (4) In addition, it argued that despite the Nuremberg Code, the concept of informed consent was not well known in this er
Annals of Internal Medicine