Conclusions

. Extend the sphere, and you take in a greater variety of parties and interests; you make it less probable that a majority of the whole will have a common motive to invade the rights of other citizens; or if such a common motive exists, it will be more difficult for all who feel it to discover their own strength, and to act in unison with each other.

Federalist Papers 10

Conflict and controversy about values occur in any society. Controversy over science and technology, however, entails unique clashes between expertise and ignorance, encompassing ideals about rationality and progress and challenging our traditional notions of legitimacy and authority.

There are several significant messages delivered by the preceding case studies. They tell us that pluralism and democracy are not very efficient but are robust in the conduct of American science and medicine. They illustrate that advances in science not only are complex but have a multiplier effect in U.S. society, giving birth to complexity upon complexity, that makes rational decision making as to the best way to proceed exceedingly difficult. Yet somehow we muddle through, adjusting the system in incremental ways through a variety of processes. The process we use to make decisions might give us clues as to whether the decision will succeed, even if it is impossible to predict what the decision will be.



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BIOMEDICAL POLITICS Conclusions . Extend the sphere, and you take in a greater variety of parties and interests; you make it less probable that a majority of the whole will have a common motive to invade the rights of other citizens; or if such a common motive exists, it will be more difficult for all who feel it to discover their own strength, and to act in unison with each other. Federalist Papers 10 Conflict and controversy about values occur in any society. Controversy over science and technology, however, entails unique clashes between expertise and ignorance, encompassing ideals about rationality and progress and challenging our traditional notions of legitimacy and authority. There are several significant messages delivered by the preceding case studies. They tell us that pluralism and democracy are not very efficient but are robust in the conduct of American science and medicine. They illustrate that advances in science not only are complex but have a multiplier effect in U.S. society, giving birth to complexity upon complexity, that makes rational decision making as to the best way to proceed exceedingly difficult. Yet somehow we muddle through, adjusting the system in incremental ways through a variety of processes. The process we use to make decisions might give us clues as to whether the decision will succeed, even if it is impossible to predict what the decision will be.

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BIOMEDICAL POLITICS For those who believe in rationality, there is the disappointing message that chance, fate, and just plain politics lurk behind every decision. Only historians will know at what point they play a significant role. The cases also illustrate the fact that putting a “human face ” on a problem means it will probably be solved sooner, if not better. Several cases reveal that precedent setting makes people uncomfortable because they are reluctant to be held responsible for future decisions in which they have no part. Other cases demonstrate that, for some decision makers, making history is important—the positive side to setting precedents. Finally, and fortunately, the selected cases show us that, in general, people want to do the right thing. Each case is a unique constellation of occurrences. They address issues of equity; strongly held ethical values; trustworthiness of actors, numbers, and techniques; authenticity of experiences; the influence of competition; the dilemma of setting precedents; and the challenge of effectiveness. They are about the search for legitimation and empowerment of the lay public. They illustrate our concern as a society for sufficiency of information and authority. Together the cases illustrate a spectrum of problem solving, ranging from coexistence to conflict to cooperation. THEMES OF DECISION MAKING Although there are structural similarities among the six cases in this book, a reliable taxonomy of biomedical decision making failed to emerge from this exercise. This is not to say that one could not be developed. Rather, the case study method militates against a normative approach. A different approach to the study of decision making would be needed to develop a solid theoretical framework. While a rational approach to decision making was not the expected finding of this exercise, themes were anticipated to emerge. And they did. Across the six cases were the complexities of pluralism and democracy, the frustrations of incrementalism, the surprises of chance and fate, the danger of precedents, and the tension between politics and expertise. Pluralism and Democracy A significant social trend in this country over the past few decades has been an increase in direct participation by the public in social and organizational decisions. Simultaneously, the problems facing our nation seem to have grown in complexity and volatility. History and the development of social events such as the civil rights and women's movements have sensitized different groups and forever moved certain issues such as reproductive rights, environmental standards, and re-

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BIOMEDICAL POLITICS search missions into the public domain. As groups became more sensitized, they also became more assertive (Nelkin, 1984). The trend toward more citizen involvement in decision making follows from the evolution of authority, which was first held by religious groups, slowly moved to scientific and technical experts, and most recently has been held by the law. Recent years have seen more authority being held by the public, and this change has required increased negotiation. As a result, decisions are made in broad daylight and the public can now choose whether to participate. Such freedom of choice on the public's part, however, does not exist when moral authority is held by any single body within society. The philosopher Tristram Engelhardt asks, “How do we resolve policy disputes in a society where there is no longer a moral authority, and absence of shared faith?” He answers that, somehow, we must accommodate a plurality of viewpoints (Engelhardt, 1990), but accommodation can be a painful and prolonged process. In the RU-486 and fetal tissue cases, the nation's polarization on the abortion issue created paralysis. The degree of opposition appears to make a compromise or rational adjudication of differences impossible. Even open discourse is inhibited. The fetal tissue case is about socially acceptable public policy with respect to a new procedure. Like the RU-486 case, it is about moral politics and its influence in decisions. When Alexis de Tocqueville first warned of the “tyranny of the majority,” he could never have foreseen the impact of mass media and public opinion polls, which have forever altered our perceptions of the majority and minority in America. Today, more than ever, all views claim legitimacy, and the views that are able to mobilize votes have power. The Bill of Rights has always protected the voices of those in the minority, but it has been only in recent history that those on the fringe have been able to use the media to penetrate the mainstream. This new capability is the lesson of the ddI and RU-486 cases, in which groups not in the majority were already organized. When the issue of nonsurgical abortion through RU-486 arose, antiabortion groups were there to react and slow the testing and distribution of the drug. When AIDs therapeutics proved too slow in coming and often a failure, the gay community, already organized to fight discrimination, was there to demand change. The ddI case illustrates the unprecedented involvement of persons affected by the disease in decision making at the drug development level. The gay community was predisposed to question and distrust the health and scientific establishments. Those making decisions about new drug development were obliged to involve the activists in their decisions. Although there was some confrontation, there was also a great deal of dialogue.

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BIOMEDICAL POLITICS The lesson to be learned from these examples is that decisions made in modern pluralistic society require that all those with a vested interest in the outcome be brought to the discussion at some point. One might argue that knowing whether a decision is right generally requires time; thus, only time will clarify whether the early use of ddI or RU-486 will have the positive effects some anticipate. One test that can be applied is asking whether the decision will hold up over time, and the answer may have to do with who sits around the table. Of course, this was not the case in the fetal tissue example, in which the “right” people were brought to the table to debate the issue only to have political forces negate their efforts. The end-stage renal disease case shows us that even the best intentions and bringing together collective wisdom can still result in a decision that has proven over time to be very expensive for society. Crafted as a mechanism to provide financial equity, it has become an inequitable decision in that it favors those with one disease and not another. Not inviting the right people to the table can prove troublesome later. Critics of the Asilomar process have argued that the public was not adequately involved in the initial discussions, and it was only good judgment and proper restraints on the part of the scientists that prevented disaster. Had a moratorium not been in place, and had a biohazard occurred, science would have been set back severely once the public realized what had happened. In an ideal decision-making situation, involving people from the start invests them in the process and possibly in the outcome as well. There is a caveat, however. Involving people in the process of deciding, without giving them the authority to decide, may result in decisions that are impractical. The fetal tissue case reminds us that advisory panels rarely have authority. Lack of authority may sometimes embolden panels to make recommendations that are intellectually and even spiritually sound, but politically untenable. Is there a problem in the way we try to involve multiple actors in the decision-making process, or do these cases merely describe unusually complex issues? Certainly, there will always be tensions. Religion is no longer a particularly useful mechanism for resolving disputes. Some people resort to the law, but laws can be wrong or ambiguous. Others turn to procedural approaches—if we follow a process that everyone agrees is correct, then we should come up with an answer that we can agree on or accept. The questions, however, then become, was the process ethically defensible? Did we stimulate dialogue instead of confrontation? Did we recognize new constituencies and try to determine who stands to get hurt? Answering yes to these questions may be as close as we can get to the truth. We may have to settle for the politics of the second

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BIOMEDICAL POLITICS best because there may not be a best. And what is best by scientific or medical standards may not be the best political option. Incrementalism Policymaking is the totality of the decisional processes by which a group decides to act or not to act. Traditionally, there have been two views of this process, the rational approach (Lasswell, 1963) and the incremental approach (Lindblom, 1968). The incremental theory, popularly known as the science of muddling through, claims that the rational approach is unrealistic. The rational approach, which begins with information gathering and ends with appraisal and determination of a policy, allows for a scholarly dissection of the policy process in retrospect but is difficult to follow prospectively. Incrementalist accounts of decision making stress the impossibility of making the correct choice and the need to limit the costs of the errors that will inevitably occur (Collingridge, 1989). These principles are illustrated in Rettig's account of the decision to provide reimbursement for ESRD, when the decision makers believed that national health insurance would soon be in place. Obviously, the problem with incrementalist approaches is that their result is public laws that are disjointed, incomplete, and sometimes contradictory. Science and technology challenge the incrementalists because they often cause revolutions both in technical possibilities and in thinking. In the cases described here, scientific and technological uncertainty is complicated by the presence of multiple stakeholders with conflicting values and beliefs about the most desirable direction and magnitude of progress. The cases illustrate how biomedical public policies are made by actors in a political system. They inform us that decision making, even in science, has becomes less an analytic endeavor than a process of mediating among parties with differing levels and types of knowledge—a kind of “knowledge management” (Hart, 1986). Decision making is not merely the process of choosing among competing alternatives. The cases show us that decisions, even on the grandest of scales, are made on an interpersonal level through haggling, pressing, and persuading. In some of the cases, such as those involving ESRD and the human genome, timing and chance seem to play as much of a role as any other more rational or controllable factor. All six cases show that decision making involves the bringing together of facts and values. It is relatively easy to separate the facts from the values retrospectively. The problem in complex decision making is to bring all the relevant information together at points where certain choices are made (different roles in decision making) and recognize at

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BIOMEDICAL POLITICS the time where facts or values reign. Because advances in science and technology come in two very different forms—revolutions, or the slow accumulation of knowledge leading to breakthroughs—there is no easy way to align facts and values. Chance, Fate, and Politics Frequently in decision making, one or two people can really make a difference, such as Charles DeLisi and David Smith of the Department of Energy in the human genome project, Anthony Fauci in the ddI case, and Paul Berg in the Asilomar example. With excellent judgment and good luck, they can make the right choices. Sometimes timing is the controlling factor. The ESRD case shows us that the time was right for the Senate to pass the legislation providing funds for treatment of kidney disease. A year sooner or later might have produced a different result. It was also chance, or fate, that led to two critical events: the alleged miscommunication about the actual costs of treatment and the good luck that Shep Glazer did not die during dialysis before the House Ways and Means Committee. No one could have calculated these two events into any a priori evaluation of possible outcomes. Chance was also a critical factor in the ddI case. The fact that the Reagan administration was actively promoting deregulation of all industries was a convenient coincidence that helped facilitate the parallel track. In the genome case we see that, by chance, construction of the Keck telescope inadvertently but directly set in motion discussions that would lead to the human genome project, proving that momentous ideas can be born in unlikely places. Depending on one's view of the value of cost estimates, luck might also play a role in their accuracy. The ESRD and genome cases illustrate the hazards of trying to assign costs to events that will continue far into the future. It is not that these estimates should not be made, but rather that they should be made on various scales, with plausible scenarios assigned to each figure. In such cases preparedness appears to be more important (and more possible) than correctness. Precedents and the Slippery Slope In several of the cases, key actors expressed concern about the possible impact of current decisions on future choices. The ddI case is a good example: Levi describes the worry at FDA about modifying the regulatory process in such a way that the changes would complicate the approval of new non-AIDS drugs. The AIDS activists felt they were

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BIOMEDICAL POLITICS already sliding and initially had little concern about the effect of their lobbying efforts on future drugs and future disease groups. It was only later in the debate that they recognized that their requests for use of an experimental drug in a dying population might affect other groups of patients. In the fetal tissue case, Childress documents the concern, on the part of some panelists and key administration officials, that condoning the use of fetal tissue would set a precedent resulting in an increased demand for surgical abortions. At Asilomar, some scientists expressed concern about imposing a moratorium because of the lasting effect it might have on future decisions. The ESRD case is about entitlement, access, and equity, and the slippery slope of precedents. Why this concern about precedent? It seems that although individuals are usually willing to take responsibility for their own actions and decisions, they do not want to be held responsible for future decisions that may be much more troubling. The fear of the slippery slope can be put into very concrete terms: once we head down this path, can we turn back? Some writers have argued that if rationales are given for why a decision was made, the slippery slope argument can be addressed (Mendeloff, 1985). If a group can agree on a decision, even though they disagree on principles, then rationales should be provided for why they chose to agree—even if those rationales are as simple as accommodation to the realities of limited time, information, and reasoning ability. Sometimes if the problem has a clear human aspect, such as it did in the ddI and ESRD examples, concerns about precedent take a back seat. In both of these cases the present and the future placed uneven demands on those making the decision. A decision made today could literally save lives, and it seemed immoral or indecent not to provide funds where they could have such an immediate impact. The value in the present thus overshadowed the cost to the future. The decision makers were not unaware of this dilemma, but perhaps did not perceive the place their decision might assume in history. Politics, Expertise, and Process There is a continuing tension over the degree to which politics should be modulated by scientific expertise (Levine and Benda, 1986). Many scientists feel that to make decisions about science, one must know science. But the centrality of science and scientific knowledge to American life implies that science is too important to be left to the scientists (Hill, 1989). The ddI case highlights the public dimensions of science and medicine and shows that science cannot always dictate the terms of engagement. Congress now has the help of such agencies as the Office of Technol-

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BIOMEDICAL POLITICS ogy Assessment and the Congressional Research Service to help it understand scientific and technological issues. Executive agencies routinely seek the advice and presumably the principled guidance of scientific experts. Recently, the boards advising the U.S. government comprise not just scientists but theologians, ethicists, lawyers, and laypersons. Boards and panels were convened to discuss the human genome project; a committee was formed to advise the Bureau of the Budget on treatment for ESRD; and an advisory panel debated the use of fetal tissue for therapeutic transplantation. What were the roles of these groups? How well did they succeed? Did they inform the debate, reassure the public, or build consensus? To some extent they might have accomplished all of these objectives, had their deliberations been more widely publicized. They each draw attention to the issue of how scientific panels and reports are used in the political process. The Gottschalk report was never seen by the members of Congress and their key staff in making the landmark ESRD decision. The deliberations of the fetal tissue panel were never widely distributed but instead summarized in single-column press coverage. For political reasons, the sponsors of such expert bodies might not always want their recommendations publicized. Nevertheless, if the sponsors are public agencies, then there seems to be a duty to make the results known. In the Asilomar case, scientific experts submerged themselves in an emerging policy problem and attempted to extrapolate beyond what was known scientifically. In doing so, they resorted to cognitive processes that are not significantly different from those of the layperson. Yet the cutting-edge nature of the research could only be assessed by its practitioners. If the audience at Asilomar could not reach consensus, there was no one else to turn to. Consensus building in science is traditionally aided by three conditions: autonomy, disciplinarity, and a low level of critical public scrutiny (Collingridge, 1989). These break down as soon as the science is thought to be relevant to policy. Autonomy becomes limited and disciplinary barriers become confused because policy problems are by nature interdisciplinary. In addition, public problems are more critically scrutinized. If one accepts these notions of consensus building inside and outside of science, the Asilomar case represents a remarkable example of how scientists overcame their amateur standing in policymaking. They were neither prepared nor experienced in how a group should arrive at the kind of decision they were attempting to make, yet they did so with remarkable expediency and, in retrospect, with admirable responsibility. Some feel that the Asilomar case sends a positive message to the nonscientific community: their mistrust of the professional elite can be laid to rest because such individuals can and will adopt moral prece-

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BIOMEDICAL POLITICS dents in the realm of science and technology. Even so, there is no mechanism in place for dealing with this type of issue again. In contrast, the human genome case is about the decision to fund a very costly program in the face of dissent within the scientific community. The case describes the ad hoc process by which it was conceived, formulated, and ratified at several levels in the federal science agencies. It involves visionary scientists, skilled bureaucrats, timing, and pure politics. The budget process was the mechanism by which the policy was made. In many ways, this was an invisible decision, made in Washington, about Washington, by a small number of people. If the public knew what was being planned, would they have stopped it? Perhaps it was the informal, ad hoc nature of the process that helped the project get funded. There was no focal point; the issue was a moving target. It was easy for those in the scientific community who were opposed to the project to get lost in the process. Some have charged that the project was steamrollered through Congress without adequate debate. Politically, the project left the arena of scientific debate and took on a life of its own because it had to do with power and “turf.” Again, as in the case of Asilomar, there was a vacuum in place of an adjudicating body. Nowhere is the lack of adequate process more visible than in the RU-486 case, where political events rather than informed discussion led the debate. In the controversy over abortion in this country the lines are so sharply drawn that any deliberative body would probably be viewed as too political to have any legitimacy. Because of this, the RU-486 case is likely to unfold in as diffuse and decentralized a process as one could conceive. It is the case of not making a decision that in effect is a decision in favor of one side of the controversy. In defense of the bureaucracy, however, one might point to ddI. In an age when bureaucracy seems to be unresponsive and at times unacceptably slow, the ddI case reminds us that we are all capable of remarkable shifts of attitudes. This was certainly true of the scientists and regulators involved in the decision about ddI who were able to forgo a strongly held position in favor of one they had bitterly opposed. The case also reminds us that hard choices often bring together strange partners. Levi illustrates an unusual confluence of interests—among AIDS activists, regulators, drug companies, and scientists. Each group had different reasons for seeking parallel track and early release of ddI, and ordinarily the missions of these groups would conflict. The unexpected coalition that did, indeed, result remind us of the importance of carefully assessing the “whos” and “whys” of any decision 's dynamic. The case of ddI is also about seeking change through traditional formats. No new regulations were needed—just a new way to use an ac-

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BIOMEDICAL POLITICS cepted process, which is perhaps why the ddI effort succeeded. The United States is a pragmatic society, and Americans often seek the path of least resistance. QUESTIONS FOR RESEARCH Each of the cases in this volume raises its own set of issues and areas of uncertainty, but questions common to most, if not all, of the cases became apparent as the committee read through and discussed them. Some of these questions reflect a lack of understanding of the interactions of science and policy; others are raised because of lack of good data; and still others come from concerted introspection into how scientists as experts can operate in a society where authority is sometimes viewed as insufficient for action. One goal of this effort was to develop a set of questions that might be pursued through future research. Nine overarching issues were identified and are described below. How and Why Does an Issue Become Public, and What Is the Proper Response? People who make policy in areas of biomedical research would benefit from a greater understanding of why some issues trigger immediate, intense public reaction and others do not. For example, the RU-486 case demonstrates the power of the antiabortion lobby in influencing the decisions of pharmaceutical executives. On the other hand, the human genome project, which is likely to lead to improved capabilities for prenatal diagnosis of genetic defects, was never targeted by groups concerned about termination of unwanted pregnancies. What roles do immediacy, magnitude, and cost play in the public's reaction to an issue? Is there any way to predict with any certainty that an emerging technology or application is going to receive more public scrutiny than others? What Are the Roles of Science Versus the Public in Risk Recognition, Perception, Assessment, and Management? In the Asilomar case study, the scientific community took the risk of raising the issue of potential biohazards from recombinant DNA research. Since Asilomar, numerous grassroots and national efforts have been directed toward monitoring and, in some cases, delaying the conduct and siting of research on recombined organisms. Would the public outcry have been as strong or as swift if the scientific community had not come forward with their concerns? Some scientists say they regret this ex-

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BIOMEDICAL POLITICS perience, that it discouraged them from being forthright in future situations. Yet the willingness of the scientific community to be the first to warn also allowed them to play a primary role in the development of guidelines and regulations—a sort of preemptive strike. Similarly, in the human genome case, Watson recognized that issues related to acceptable risk, ethics, and legality would follow the project and thus set aside a portion of the project budget to address those questions. The issue of risk perception is integral to formulating biomedical policy. In the case of ddI and AIDS treatment, the gay community asked that individuals be allowed to determine their own acceptable risk and that scientific judgment take a back seat to personal choice. Decision makers could benefit from a greater understanding of how people perceive risk, which might also allow for more autonomy in decision making. In addition, it would benefit the assessment and management of risk, two critical areas of underfunded research. What Are the Role and Impact of the Media in Publicizing and Defining the Debate? The media are often the first line of communication to the public on issues of science and technology (Nelkin, 1988). Keeping in mind the old saying that it is easier to form public opinion than to change it, the manner in which the press defines the issue, presents its dimensions, and follows up on it may be more important than any other factor in a biomedical debate. How the media collect information deserves more study, as do media attitudes toward science. Impediments to effective communication between scientists and the media should be explored, including such topics as how to present complex information, how to convey uncertainty, how to overcome lack of public interest, and how to deal with the reluctance of scientists to step beyond the facts into values and opinion. How Can We Evaluate and Predict the Impact of Single-Issue Politics? The cases on RU-486, fetal tissue, and to some extent ddI illustrate the remarkable emergence of single-issue politics in America. Very often, biomedical disputes arise over moral differences—whether to terminate a pregnancy, refuse to resuscitate or prolong life, or risk a life through experimental therapies. Because single issue voters tend to tie their vote to moral issues, it seems that biomedicine is bound to become enmeshed in the politics of single issues as public involvement overwhelms the debate, driving the experts out of the dialogue. More needs to be known about how these influences affect decision makers and whether there is any way to bring all viewpoints into the process.

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BIOMEDICAL POLITICS How Have the Ground Rules and Institutions Changed in Biomedical Decision Making? The six cases, because they span the years 1969 to the present, reveal that the environments in which decisions are made change rapidly. In addition, decision making is continuous. To understand policies, therefore, one must look at the context in which they were made, recognizing that decisions do not have an internal autonomy. Policy analysts as well as decision makers might be more effective if they understood that precedents might not always apply to a new situation and that rules made in another time may no longer be relevant. For example, the Congress described in the ESRD case study was a different body than the one found in the human genome story. It was organized differently, and its expertise was more centralized. Furthermore, it operated under a very different set of assumptions about the future. Although both cases illustrate spending decisions, and appear to be quite diverse when the nature of that spending is considered, greater differences are apparent in the way that costs were developed and negotiated. History is instructive in highlighting similarities and differences; its uses for decision making deserve more attention (Neustadt and May, 1986). How Can Costs of Research and Treatment Be Estimated to Diminish Future Conflicts? Cost estimates can be used to promote or discourage a new initiative, and seriously erroneous estimates can literally cost lives. Yet we often let the numbers carry us away. We need not only better methodologies for estimating costs but also greater understanding of how much weight cost estimates carry in the minds of those making decisions. At what point do decision makers allow costs to counterbalance effectiveness? The cases on ESRD and the human genome project demonstrate the role costs can play in a decision. In both cases, uncertainties were not adequately factored in. For ESRD, the unanticipated and widespread use of dialysis in elderly and terminally ill populations was not considered. In the human genome case, the decision makers did not seem to calculate the relative costs of such a large-scale project in times of budgetary constraint. Where there is overconfidence, it must be identified. Where there is uncertainty, wider bands must be drawn around costs. In sum, more research is needed on the methodology of cost estimates, specifically on the assumptions underlying them.

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BIOMEDICAL POLITICS When Is Consensual Decision Making the Most Desirable Approach? To answer this question, we need a better understanding of the behavioral and social aspects of consensus seeking and building. Consensus can be obtained in many ways. In the case of fetal tissue transplantation, an advisory panel was asked to deliberate on 10 issues and reach a consensus that could be communicated to the assistant secretary for health. In the case of ddI, consensus was arrived at slowly and informally, and to some was hard won. What are the assumptions behind the consensus type of decision making, and what do decision makers feel they gain from following that route? In consensual decision making, panel composition is crucial. How panels are selected will influence outcome. The selection process and its effect on outcome deserve further study. What Are the Domains of Politics and Science? Where Do They Overlap? What Is the Role of Expertise? There is general agreement that science should be accountable and communicative, given its public nature (as a result of both its funding and its application). Very often, scientists' knowledge is a result of society's investment in them. In addition, scientists are valuable and sometimes exclusive sources of important information. That information can be powerful, and it is the duty of the scientist to share that power. Increasingly, the public is a partner in determining the adoption of new technology and is likely to become more litigious as it becomes more informed. The role of science is not to prevent litigation but to provide accurate information so that debates will be more informed. As science and politics mix more frequently, as was illustrated in every case in this book, exploring the domains of the two cultures and understanding where they can conspire or clash become more compelling. Who Represents the Public? Although the public increasingly intervenes in biomedical decision making, it is often through proxies. For example, citizens may call or write their elected officials (as well as vote for those who represent their interests) or donate money to advocacy groups. In some cases, the media take on the responsibility of proxy by investigating and reporting on stories deemed to be in the public interest. On the side of decision makers, public officials and elected representatives may feel that they are acting in the public interest. Scientists can also act in what they perceive to be a civic role. Who represents the public and when do they have legitimacy?

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BIOMEDICAL POLITICS QUESTIONS FOR POLICY MAKERS Is it possible to plan better and to make more rational decisions in an irrational world where there are no absolute standards and where people hold diverse views? Or must we forever bear the social costs of learning by trial and error? One way to reduce the costs and the level of error is to involve the public in the decision, thereby enhancing social learning (Nelkin, 1984; Rip, 1986). By nature, however, the process will be ongoing, pluralistic, and fragmented. Policymakers are accustomed to that kind of discomfort; scientists are not. Decisions made by following democratic procedures need not be better than those made autocratically, but they will be more acceptable and carry more weight in a society that values democracy. Problems can be dealt with on the organizational level, where the goal is to satisfy and reduce uncertainty, or on the personal level, by evaluating stakeholders and their interest, and estimating power struggles. The six cases suggest that decisions must be made on both levels. To achieve this balance, decision making must allow for interaction among the issue's key stakeholders in order to minimize serious cognitive or judgmental bias. Yet the democratic process requires rules for interaction, the basis for which is due process guarantees, hearings, and administrative law. What makes the rules hard to follow is the use of moral discourse in policy determination. When the nation cannot agree on values, it finds it hard to agree on solutions to difficult problems. What then can be done? We can ask the following questions before taking any action. Do we understand the problem? Can we formulate the issue? Do we understand the scientific facts or the technology? Have we identified the uncertainty and recognized its implications? How explicit are the values involved? Have we identified and involved the constituencies? Have we articulated all of the options? Do we know how to extrapolate beyond our present knowledge? Have we tried to stimulate dialogue, not confrontation? What is our personal stake in the decision? Where can we find advice and authority, and what role will they play? What is the best social forum for resolving the conflict so that polarization will not prove paralytic? Answering some of these questions can provide decision makers not with the right decision, but with a more enlightened framework within

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BIOMEDICAL POLITICS which to make a decision. Because most of the decisions described in this book are still being played out, one can only speculate whether they were correct. One way of viewing the biomedical decision-making process is through a sort of existential paradigm, whereby no decision is exhaustively describable or understandable in scientific terms. The irreducible uniqueness of each situation deserves special consideration in analysis. The paradigm of science as it relates to utility is set within the existential paradigm. Science is so much a part of our society that it is no longer useful, or helpful, to consider it in isolation. A decision maker who does not recognize the tensions within the paradigm is more likely to make a decision that will gain little support and may eventually have to be abandoned. REFERENCES Collingridge, D. 1989. Incremental decision making in technological innovation: What role for science. Science, Technology, & Human Values 14(2):141-162 spring 1989. Engelhardt, H. T. 1990. Integrity, humaneness, and institutions in secular pluralistic societies In Integrity in Health Care Institutions: Humane Environments for Teaching, Inquiry, and Healing, R. E. Bulger and S. J. Reiser, eds. Iowa City, Iowa: University of Iowa Press. Hart, S. L. 1986. Managing knowledge in policy making and decision making. Knowledge: Creation, Diffusion, Utilization 8(1):94-109 September 1986. Hill, C. 1989. How science policies are determined in the United States. The Evaluation of Scientific Research. New York: John Wiley & Sons. Lasswell, H. 1963. The Future of Political Science. New York: Atherton. Levine, C. H., and P. M. Benda. 1986. Expertise and democratic decisionmaking: A reader. Science Policy Background Report No. 7, Committee on Science and Technology, U.S. House of Representatives. Washington, D.C.: U.S. Government Printing Office. Lindblom, C. 1968. The Policymaking Process. Englewood Cliffs, N.J.: Prentice-Hall. Mendeloff, J. 1985. Politics and bioethical commissions: ‘Muddling through' and the ‘slippery slope.' Journal of Health Politics, Policy, and Law 10(1):81-92, Spring 1985. Nelkin, D. 1984. Controversy: The Politics of Technical Decisions, 2nd edition. Beverly Hills, Calif.: Sage. Nelkin, D. 1988. Selling Science: How the Press Covers Science and Technology. San Francisco: W. H. Freeman. Neustadt, R. E., and E. R. May. 1986. Thinking in Time: The Uses of History for Decision Making. New York: The Free Press. Rip, A., 1986. Controversies as informal technology assessment. Knowledge: Creation, Diffusion, Utilization 8(2):349-371, December 1986.