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7. Research Bioethics from the Bench to the Bedside
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Chapter SeveN Research Bioethics from the Bench to the Bedside On May 16, 1997, President Bill Clinton apologized to the eight remaining survivors of a government-funded syphilis study, conducted between 1932 and 1972, in Tuskegee, Alabama, by the U.S. Public Health Service.1 The nearly four hundred participants who had been enrolled in the Tuskegee Syphilis Study, most of whom were poor, illiterate, African American sharecroppers, had not given, and were not asked for, their informed consent, and were not informed of their diagnosis. Furthermore, rather than end the study, the Tuskegee scientists chose to withhold penicillin from the study participants even though they were aware that the drug could have cured them of their illness. The study continued until a leak to the press generated a public scandal that ended the research program . By then, nearly a quarter of the participants had been allowed to die from syphilis or from medical complications related to the disease. Not surprisingly, the Tuskegee study has been described as “arguably the most infamous biomedical research study in U.S. history.”2 In response to the press report and the public firestorm that it created, the federal government commissioned the Belmont Report (1979) that led to the establishment of institutional review boards nationwide to monitor all experimentation with human subjects.3 207 1. “Remarks by the President in Apology for Study Done in Tuskegee,” May 16, 1997, at http://clinton4.nara.gov/textonly/New/Remarks/Fri/19970516–898.html. 2. Ralph V. Katz et al., “The Tuskegee Legacy Project: Willingness of Minorities to Participate in Biomedical Research,” J Health Care Poor Underserved 17 (2006): 698–715; 698. For details and further discussion on the Tuskegee Study, see James H. Jones, Bad Blood: The Syphilis Experiment, rev. ed. (New York: Free Press, 1993); and Fred D. Gray, The Tuskegee Syphilis Study: The Real Story and Beyond (Montgomery, Ala.: NewSouth Books, 2002). 3. For discussion of The Belmont Report, see James F. Childress, Eric M. Meslin, and Harold T. Shapiro, eds., Belmont Revisited: Ethical Principles for Research with Human Subjects (Washington, D.C.: Georgetown University Press, 2005). 208 Research Bioethics Bench to Bedside In this chapter, which deals with the moral questions raised by biomedical research, I will begin with a discussion of the vocation of the scientist , by focusing on recent papal addresses to the Pontifical Academy of Sciences. According to the popes, the scientist is a professional who is called to serve the human person by discovering the truth about creation and by improving society through technological advances. I then deal with experiments with human subjects: what are the moral limits for protocols that involve human participants, especially experiments that target developmentally immature human beings, such as embryos and fetuses ? Next, I address two specialized areas of biomedical research involving human subjects, genetic engineering and neuroscience, which have been the focus of much recent ethical debate. I continue with a parallel discussion of the morality of animal testing: how can one justify the routine , and sometimes lethal, experiments that are done with monkeys, rabbits , and mice, in laboratories throughout the world? Finally, I close with a discussion of the moral controversy surrounding stem cell research and the emerging field of regenerative medicine. The Vocation of the Scientist Like the health care professional considered in chapter 4, the research scientist has a specific vocation prepared by the Lord. As Blessed John Paul II explained to the members of the Pontifical Academy of Sciences, a scientist is a way of being someone, rather than just a way of doing something : “Every scientist, through personal study and research, completes himself and his own humanity. You [scientists] are authoritative witnesses to this. Each one of you, indeed, thinking of his own life and his own experience, could say that research has constructed and in a certain way has marked his personality.”4 Like everyone else who has a vocation, a scientist is called to pursue his research endeavors for his own salvation and for the salvation of others. In his many addresses to the Pontifical Academy of Sciences, Blessed John Paul II highlighted three important dimensions of the scientist’s vocation . First, the scientist is a person who is called to seek truth: “The search for truth is the task of basic science. The researcher who moves 4. John Paul II, “Address to the Plenary Session on the Subject ‘Science and the Future of Mankind,’ November 13, 2000,” in Pontifical Academy of Sciences, Papal Addresses to...