Appendixes



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BIOMEDICAL POLITICS Appendixes

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BIOMEDICAL POLITICS This page in the original is blank.

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BIOMEDICAL POLITICS A The Public and the Expert in Biomedical Policy Controversies Stanley Joel Reiser The landmark health policy cases of the last two decades have seen the American public and experts from the scientific and medical communities linked in dialogue (and sometimes controversy) to resolve issues of far-reaching social as well as scientific import. Before such a dialogue could occur, however, a set of events in the field of medicine brought both parties together and facilitated these exchanges. With World War II as a backdrop, the public and the community of experts sparred over the authority to enter each other's private domain and influence the actions that took place there. This essay examines the developments that brought these two groups to their current positions as partners in the public policymaking process. QUESTIONING THE EXPERTS: THE CHALLENGE FROM LAYMEN By the end of the Second World War, science and technology had come to be seen as fundamental forces impelling social growth, whose prominence, caused rising exhilaration and deepening apprehension. Some saw such advances as the harbingers of a new age in which the drudgery and dangers of life would be lifted from the shoulders of humanity through, for instance, increased automation and the discovery of cures for many dread diseases. Others, no less intrigued with these benefits, nevertheless perceived a darker side. Their concern had sev- Stanley Joel Reiser is the Griff T. Ross Professor and Director of the Program on Humanities and Technology in Health Care at the University of Texas Health Science Center, Houston.

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BIOMEDICAL POLITICS eral dimensions. Would seeking technological solutions to the problems of life cause human activities to be reduced to expressions of technique (Ellul, 1967)? Would the weapons made possible by technology, already powerful and with greater destructive capacity certain to follow, ultimately destroy humanity (Brown, 1963)? Would planning and change based on technological transformations of basic social institutions, such as cities, damage essential human values and relationships (Mumford, 1934)? These questions were all being raised, but in the context of the subject of the report to which this appendix is attached, a major concern dealt with the functioning of democracy (Aron, 1962). As all fields of human endeavor were enhanced by scientific and technological knowledge, experts appeared who claimed mastery over this learning, which had now grown too voluminous and complicated for the average person to grasp. These experts (“technocrats,” as some called them) were increasingly recruited to provide advice about and manage social enterprises and policies, and their very expertise became a source of concern. If knowledge was now so vast that only specialized experts could penetrate the intricacies of a particular subject, what would be the fate of democracy? How could the ordinary citizen with a general education, the legislator, for example, be expected to understand the different sides of a complex issue? How could legislators or citizens retain firm control of the reins of social enterprises like government when experts held sway over society's most essential knowledge—the reach and limits of its technology? What would happen to democratic institutions if technological authority became subtly transposed into political power, with the expert piper increasingly calling the policy tune? A response to the question of whether citizens as individuals and collectively as the public could meet the challenge of experts came in the 1960s, from the sphere of medicine. The physician had long been an archetype of authority, able to wield an expanding array of technology of much complexity and variety. The public had a level of personal and intimate contact with this technology, and with those who wielded authority over it, that was greater than its contact with perhaps any other area of learning. In addition, post-World War II developments in medical science had brought the technological side of medicine to high public visibility by the 1960s; both through personal experiences with therapy and through the media. The physician's expert authority had a long history. Early records, such as those from the Hippocratic literature of ancient Greece, recognize this power and seek to ensure that it not be abused. The Hippocratic oath, for example, is quite emphatic that physicians must not take advantage of the person who, to regain health, entrusts them with access

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BIOMEDICAL POLITICS to his or her physical self and the secrets of personal experience. The doctor is bound by this oath to respect the person of the patient and to keep information received from the patient confidential. Yet the doctor through history has also believed strongly in the duty to shield a patient from harm. The exercise of this duty required, as physicians viewed it, authority over the therapy they were providing subject to their expert learning and large experience. For instance, the conviction that knowledge of a threat to life or limb would wound a patient by causing despair and depression has led doctors from Hippocratic times until the present to systematically withhold such information from patients. A Hippocratic statement on this issue in the essay Decorum explains this dominant medical view about wielding benevolent authority: “Give necessary orders with cheerfulness and serenity, turning his [the patient's] attention away from what is being done to him; sometimes reprove sharply and emphatically, and sometimes comfort with solicitude and attention, revealing nothing of the patient's future or present condition. For many patients have taken a turn for the worse, I mean by the declaration I have mentioned of what is present or by a forecast of what is to come” (Jones, 1923a). In the 1960s this ancient authority, bolstered by a new technological capability that gave physicians a therapeutic power rivaling long-held diagnostic and prognostic ones, was challenged successfully by individual patients and the public alike (Jones, 1923b). The challenge was strengthened by two of the most prominent right movements in the twentieth century—the civil rights and women's rights movements. The 1960s were filled with calls for American society to take heed of these groups, which had been deprived of human dignity and of access to political freedoms and social position. They called for recognition of an inherent self-worth shared by all, with “everybody a somebody, ” as Martin Luther King, Jr., put it. Along with the notion of worthiness, the ideal of autonomy was advanced particularly by women's rights advocates, who were concerned, among other things, about being deprived of the power to direct their reproductive lives. These movements dovetailed with events in medicine, particularly in the field of research, that were refocusing attention on the ethical aspects of its landscape. Heinous experiments on prisoners during World War II by Nazi scientists and physicians had led to the formulation of a code to guide research on humans, which was presented at the Nuremberg war crimes trials. The 10 principles were the pillars of a protective wall of rights designed to secure the well-being of future research subjects. The code's central protection was announced in its first principle: “The voluntary consent of the human subject is absolutely essential” (Nuremberg Code, 1949). The requirement of voluntariness

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BIOMEDICAL POLITICS meant subjects must be located in a noncoercive environment that allowed, in the code's words, “free power of choice.” They were also to be fully informed about the research to make enlightened consent possible. This code and the events that brought it into existence significantly heightened recognition of ethical responsibilities within the scientific community, but by themselves were not enough to produce sustained action. Thus, several decades passed before the rights-concerned environment of the 1960s produced the U.S. surgeon general's 1966 directive on research. It required all health care institutions that were receiving federal funds to empanel human studies committees to oversee the ethical dimensions of a research project. A key feature of the directive was to ensure that a process of informed consent for subjects was integrated into each research proposal. This requirement subsequently stimulated similar actions in clinical medicine. Rapidly, physicians began to shed millennia-old views that justified, through the “do-no-harm” principle, their determining the best interests of patients. Measures that had been adopted under this view, such as concealing threatening diagnoses, in general were shown to be unwise. In the new ethos, harm was also generated by the disregarding of patients' views in deciding among the benefits and risks of therapeutic alternatives. Respect for the person of the patient came to mean respecting his or her autonomy and right to know about and help choose the risks he or she would face. Formal recognition of this new situation, that the medical relationship was a partnership, was expressed in the 1973 “Statement on a Patient's Bill of Rights” adopted by the American Hospital Association: “The patient has the right to obtain from his physician complete current information concerning his diagnosis, treatment, and prognosis in terms the patient can be reasonably expected to understand” (American Hospital Association, 1973). These events were major steps forward for the subjects of scientific research and the patient community. The daunting authority of the scientist and especially the physician—certainly the most accessible expert of the twentieth century—had been successfully challenged. These experts now acknowledge that it is possible to share detailed scientific and technical knowledge—and the resulting decisions that vitally concern a patient's health and life—with laypeople who are in uniquely vulnerable situations with respect to this knowledge and decision process. Thus, the authority of laypeople to help determine how science and technology would be developed and used was purchased initially with the coin of ethical assertion and political persuasion. That clinicians and scientists acquiesced in sharing their authority was due to an ability to draw on internalized traditions of ethical reflection to sanction the arguments that became the engines of change. Disciplines lacking such traditions would have been at a disadvantage. Neither ethical nor politi-

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BIOMEDICAL POLITICS cal pressures, however, would have maintained satisfactory adherence to these changes if experience and formal studies had not demonstrated that they were an improvement. For example, physicians recognized that their expertise was in how particular classes of patients, rather than particular individuals, fared under different regimens. The doctor reigned as expert on general population reactions; the well-informed patient came out best in determining personal preference. Merging both views produced the best choice. In the end, clinicians and medical scientists saw as part of their professional responsibility respect for the views of and provision of knowledge to their public of patients and subjects who, in turn, learned to act on their new understanding. QUESTIONING THE EXPERTS: THE CHALLENGE FROM OFFICIALDOM The challenge of the ordinary citizen to the authority of the expert was paralleled in the 1960s by a similar engagement between medical experts and political officialdom. Until that time, power in medicine generally had been exercised within the private professional enclosures, and encounters of professional authorities with public officials were sporadic. For instance, in 1960, basic decisions about how medical care was to be provided were made by doctor, patient, and family acting privately. The level or extent of care was not influenced by social agencies through payment or treatment guidelines, which by 1990 had become routine. Passage of the Medicare and Medicaid acts in the mid-1960s began to alter permanently the private character of medicine. For the first time, the federal government assumed a major role in delivering medical services. Medicine now became a public enterprise: as its benefits and costs increasingly caused public authorities and society to take notice, an array of new values, disciplines, and social institutions joined existing professional ones in shaping future actions. The debate that emerged concerned the relative balance to be struck in the governance of medicine between medical institutions such as professional societies and governmental agencies such as legislatures. How beneficial but expensive medical resources should be shared and paid for earned a place on the political stage of the nation in the 1960s, and the question has retained a leading role ever since. The experiences of experts and laypeople in their private encounters, however, established the possibility for more productive exchange as this discourse moved to public forums. THE EXPERT'S JOURNEY INTO PUBLIC DOMAIN The changes in the role of the layman, as patient or official, in decisions involving research and therapy were paralleled by discussions among

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BIOMEDICAL POLITICS experts in medicine and science on the implications of entering the public domain and participating in the resolution of controversial public problems. The social power that could be wielded by experts in science and technology derived from their ability to direct natural forces and understand alternative uses to which such forces could be put. Holders of this knowledge could exert great influence on national decisions and goals by entering the political scene and becoming deeply involved in public debate; in fact, however, most did not. By the 1960s some had come forth to write articles in popular publications or submit testimony to congressional committees; fewer still devoted large portions of time to policy matters. A number of factors accounted for this behavior. In the first place, the role of the scientist and physician in public discourse remained controversial within their own professions. Could scientists or physicians remain current with the very knowledge that made them expert if they spent too much time and remained too far from their professional workplaces? Would such distancing endanger their productivity as clinicians or researchers and thus their standing with colleagues? If they lacked training in the social science disciplines that explained the policy process, how could they participate meaningfully in it? Given these kinds of questions, before and during the 1960s physicians and scientists resisted leaving the secure environment of clinics and laboratories to join officials in developing policy alternatives. Thus, fears that these experts would exert excessive control over policy and democracy were exaggerated. Instead, society grappled with the difficulties of gaining their aid in the political marketplace. By the end of the 1960s, first in clinical medicine and later in medical science, expert participation in public discourse had begun to grow. This participation stemmed in part from the recognition during the 1960s that medicine and science were losing their identity as private professions and were gradually becoming social enterprises. This transformation of viewpoint was not merely the result of growing social support. Rather, it represented an emerging public recognition that the activities of clinical medicine and medical science bore heavily on significant national goals, which justified public dialogue about the character, costs, and directions of those activities. Only by recognizing and addressing these public interests—which meant periodically leaving laboratory and clinic and educating the next generation of students about these issues—could physicians and scientists maintain their own standing as leaders, protect the integrity of their professions, and affect a public agenda that increasingly shaped their own professional lives.

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BIOMEDICAL POLITICS CONCLUSION Such social and medical developments, from the 1940s to the 1960s, set the stage for the relation between public and expert in later cases from the Asilomar controversy to the human genome debate. Firmly entrenched as participants, the public now plays a key role in deciding the uses of science and technology, just as the expert has formed a clearer view of appropriate action in matters of policy. Both groups have yet to sort out questions that repeatedly appear in contemporary biomedical policy debates such as those discussed in this volume. For the public, what kind of justification is necessary for a given interest group to place a particular subject on the public agenda? How do they justify their own claim, as opposed to the claims of other groups, to sit at the policy table and help formulate solutions? For the expert, how is the appropriate level of knowledge for policymaking to be determined? When do we know enough to act? And for both, having developed policies acceptable to contemporary constituencies, what burdens are appropriate to pass on to our successors, particularly when we create policies that may either set important precedents or encumber later generations? The ability to address these issues will grow to the extent that we continue to introduce factors into our new methods of policy development —such as better handling of the uncertainty factor and recognizing and explicating the ethical dimensions of policy issues. Participants in policy debates will also be aided by an awareness of tradition and the methods of their predecessors. Particular cases are unique, but the approaches to basic decisions that they demonstrate reflect previous events. Although the past cannot predict the present, like gravity, it exerts on us an inescapable pull. REFERENCES American Hospital Association. 1973. Statement on a patient's bill of rights. Hospitals 47(February):41. Aron, R. 1962. The education of the citizen in industrial society. Daedalus (Spring):253. Brown, H. 1963. The dangers we face. Pp. 170-177 in The Atomic Age: Scientists in National and World Affairs, M. Grodzins, and E. Rabinovitch, eds. New York: Basic Books. Ellul, J. 1967. The Technological Society. New York: Alfred A. Knopf, Inc. Jones, W. H. S., ed. 1923a. Decorum. Pp. 293-301 in Hippocrates, Vol. 2. Cambridge: Harvard University Press. Jones, W. H. S., ed. 1923b. The Hippocratic Oath. Pp. 164-165 in Hippocrates, Vol. 1. Cambridge: Harvard University Press. Mumford, L. 1934. Technics and Civilization. New York: Harcourt, Brace and Co. The Nuremberg Code. 1949. Pp. 181-182 in Trials of War Criminals Before the Nuremberg Military Tribunals Under Control Council Law, No. 10, Vol. 2. Washington, D.C.: U.S. Government Printing Office.