NOTES
NOTES Introduction 1. The executive order expired after two years, but the council was renewed by President Bush by means of Executive Order 13316 on September 23, 2003. Of his own initiative, Kass stepped down as chair just prior to the second of such renewals (Executive Order 13385, September 29, 2005). Dr. Edmund Pellegrino took over as chair,and Kass remained on the Pellegrino Council as a regular member for most of its existence.The Pellegrino Council continued to operate throughout the Bush presidency.For the most part,it receded from the spotlight of American politics and slowed its productivity, producing only one report in three years. 2. Throughout this book the terms “council” and “Kass Council” will be used interchangeably to refer to the council under the chairmanship of Kass. 3. Some commentators on bioethics commissions would parse these two tasks as “expertise” and “agenda-setting.” The former denotes the provision of specialized knowledge for policymaking, whereas the latter denotes public engagement and deliberation and the elevation of public understanding (see Dzur and Levin 2004). 4. All minutes for the meetings of the Kass Council are available on the council’s Web site, at http://www.bioethics.gov. O N E Public Bioethics and the Birth of the Kass Council 1. For an overview of the historical rise of the concept of autonomy in Western moral philosophy, see Schneewind 1998. 2. Of the twenty-three defendants, five were acquitted, and seven received death sentences; the remaining received prison sentences ranging from ten years to life imprisonment. Japan also engaged in large-scale medical experiments during World War II that included similar atrocious acts. The experiments were primarily conducted on Chinese citizens. Japanese research was never subjected to judicial scrutiny (Rothman 2004). 3. In 1930, the Berlin Medical Board proposed a regulatory body to review human-subjects research, which precipitated a debate about the ethics of clinical drug trials within the context of an increasingly powerful German pharmaceuti180 cal industry.A set of guidelines released in 1931, the legal authority of which was contested, was more comprehensive and cogent than the Nuremberg Code (see Howard-Jones 1982). 4. This is not to claim that a basic respect for persons was absent from premodern ethical thought on human experimentation. For example, in the twelfth century, Moses Maimonides instructed colleagues to treat patients as ends in themselves, not as means for learning new truths (see Rothman 2004). 5. The committee was called the Seattle Artificial Kidney Center’s Admission and Policy Committee. 6. Cases such as this eventually led to the Baby Doe regulations of 1984, which state that withholding neonatal intensive care on the basis of handicap (or in the case of extremely premature infants, increased risk of handicap) was deemed to be discrimination and a violation of the Rehabilitation Act of 1973. 7. Of course,medical codes of ethics had long existed (e.g.,the 1847 American Medical Association code). Such codes primarily addressed patient-physician relations. But it was not until the 1970s that formal regulations on biomedical research were implemented. These were novel in being government-mandated rules rather than professional self-regulations and in focusing on research rather than medical practice (though the boundary between the two is blurry—clinical practice often contributes to scientific knowledge, and research trials are often administered by physicians and have therapeutic effects). 8. Beecher’s work demonstrates that some of the impetus for external oversight came from within the scientific and medical communities. This parallels the “responsible science movement” of the 1950s, in which scientists and engineers sought to control the direction of science and technology in light of the destructive potential of atomic weapons. 9. In the mid-twentieth century, the U.S. government also conducted radiation experiments on U.S. citizens who were not fully informed about the health risks; however, these experiments were not revealed until the 1990s and so did not influence the prehistory of U.S. public bioethics. The unethical treatment of human subjects is a continuing problem. For example, accusations arose in early 2005 that U.S. physicians cooperated in the torture of prisoners at the Abu Ghraib prison in Iraq. 10. Indeed, bioethics grew out of medical ethics:“If traditional medical ethics was a form of self-critique and self-control, bioethics, at least initially, represented public critique and public control” (Dzur and Levin 2004, 336). 11. This is in contrast to more specific bodies such as institutional review...
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