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Society's Choices: Social and Ethical Decision Making in Biomedicine 5 Criteria For Success How to evaluate the products and outcomes of public ethics bodies1 using objective criteria has been a continuing question, not resolved by the work of this committee. For example, should they be evaluated relative to the specific mandate of each group or report or the particular public needs that the group or report addresses? Although certain general criteria can be articulated, their importance for evaluating a particular public ethics body may depend in large measure on the specific mission of that body. This is true not just for single-issue bodies, such as the Human Fetal Tissue Transplantation Research Panel, but also for bodies with a broader mandate, such as the President's Commission. The background paper written by Gray, who attempts to compare the "success" of the National Commission and the President's Commission, highlights many of the problems inherent in the evaluation and comparison of even two commissions, especially when the groups each have multiple functions and operated at different periods of time. Given the multiplicity of functions that public ethics bodies can serve (as noted early in Chapter 4) and the power of the societal context in which they operate to influence their outcomes (as described in Chapter 2), the committee did not believe that a complete, critical evalua- 1 The term "public ethics body" is used in this chapter and in Chapter 6 to denote a group convened to deliberate about social and ethical issues stemming from developments in biomedicine. Such groups may exist at the level of the institution, community, state, federal agency, or federal government. Generally, these groups address public policy issues that involve moral ideas such as dignity, freedom, rights, fairness, respect, equality, solidarity, responsibility, justice, and integrity.
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Society's Choices: Social and Ethical Decision Making in Biomedicine tion of all of the public ethics bodies discussed in this report was feasible. The committee instead sought to identify criteria that could be used as hallmarks (together with more wide-ranging exploration of social contexts) by individuals who are initiating or serving on such bodies, or attempting to evaluate the impact of their deliberations or reports. Past social responses to ethical quandaries in biomedicine have succeeded in a variety of ways. For example, many public ethics bodies have enlisted outstanding scholars to contribute their insights on the issue of concern. Many of the products of these bodies have been viewed as authoritative and have had a substantial impact on policy decisions, as for example occurred in the cases of defining brain death and establishing standards for human experimentation. Many products of these bodies have stood the test of time and continue to have a prominent role in education for health professionals and ethicists. Hospital ethics committees, for example, are often able to soften advocacy of patient interest in order to gain the willing participation of health care providers (Hoffman, 1991). These and other similar examples are described later in this chapter. Commissions and other public ethics bodies operate in a world where deadlines, personalities, and special interests converge. The need for consensus development and sometimes compromise is unavoidable. While the committee does not attempt in this report to perform a comprehensive assessment of the performance of every mechanism for public deliberation of social and ethical issues, it does explore some of the specific outcomes of this deliberation according to a set of criteria it identified as measures of ''success." Applying the criteria, the committee found, did not produce unqualified results. Among the criteria used for evaluation of public ethics bodies are items bearing on integrity of the reasoning process, public education (i.e., how well a report articulates the nature of a controversy, competing values, and alternative solutions, as well as how effectively the report is disseminated), and effectiveness (i.e., getting laws passed, forging a public consensus, etc.). Different reports of the same body, being aimed at different kinds of tasks, might well satisfy these criteria in different ways and to different degrees (see the background paper by Gray). The President's Commission report on Defining Death (1981), for example, was intended to provide definitive resolution of a public policy problem. Viewed from this perspective, the report was a smashing success. Its recommendations regarding the Uniform Determination of Death Act were quickly accepted by the vast majority of states. The commission's reasoning in defense of its policy proposal has been a source of continuing controversy and even disparagement in the scholarly literature (Wikler, 1993; Veatch, 1993), and this might lead us to give the report a lower score
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Society's Choices: Social and Ethical Decision Making in Biomedicine on integrity and public education. But these scales may not be the most appropriate criteria, given this view of the primary mission of that particular report. Conversely, the President's Commission report on Splicing Life (1982b) is most appropriately judged as an educational document. Seen as an attempt to calm the fears of religious leaders, and to separate morally positive work in somatic cell gene therapy from the unsavory specter of eugenics and germ-line manipulation, it would be judged a success. The report was clearly written; it deftly separated issues of genuine moral concern from ill-founded fears about "genetic engineering" and provided an excellent framework for future public discussion of the issue. The fact that this particular report did not generate new laws (as did Defining Death) or influence court decisions (as did Deciding to Forego Life-Sustaining Treatments [1983a]) would be relatively unimportant in its overall evaluation, given its predominantly educational mission. Another way of expressing this is to say that it was effective in educating the public, but not effective in pushing a regulatory or policy agenda because it was not meant to do so. Few thorough evaluations have been done on the success of various other bodies covered to deliberate social and ethical issues in biomedicine-bodies such as HECs, IRBs, professional societies, grassroots organizations, or special interest groups. In short, evaluative criteria and their specific weights depend crucially upon context, including the nature of the controversy, the specific tasks of the body, the social setting, legal environment, etc. (see the background paper by Brody in this volume). Notwithstanding this caveat, it is still possible to develop a number of important criteria that could be used in establishing, participating in, or judging the overall performance of public ethics bodies. The following discussion divides these criteria into three categories: intellectual integrity, sensitivity to democratic values, and effectiveness. As we shall see, however, there is a considerable amount of overlap and interplay among these categories. One final caveat is in order before proceeding. In offering a list and discussion of criteria for judging the success of public ethics bodies, we do not mean to suggest that the business of evaluating their performance might be reducible to some sort of perfunctory checklist. As Aristotle wisely reminds us in Nicomachean Ethics (Book 1), we must not expect more precision than the subject matter permits. There is no scoring system that will yield objective assessments that command universal assent. Often, public ethics bodies must grapple with extremely controversial and contested issues that implicate our most fundamental individual and social values. The judgments that we all bring to bear on the work of these bodies will naturally reflect our differing views on these fundamental controversies concerning life, death, and justice. Like evaluations of works of litera-
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Society's Choices: Social and Ethical Decision Making in Biomedicine ture, art, or philosophy, our critical assessments of public ethics bodies and their products ultimately rest upon nothing more, and nothing less, than the quality of our reasoning and the soundness of our judgments. Consensus is possible, but controversy is to be expected. INTELLECTUAL INTEGRITY Logic Logic is the first prerequisite of a successful report from a public ethics body. At issue here are the soundness of the reasoning and the overall coherence of the document. Does it describe the topics and issues clearly? Do the conclusions, including the policy recommendations, follow logically from clearly stated premises, or are they simply announced on the presumption that the authority or prestige of the body will carry over to its conclusions? Is the report characterized by consistency in standards, or is one standard used in one place and another used elsewhere in the report? Does the document present itself as a seamless web of argument and recommendations, all heading in the same direction, or is there a tension or perhaps outright contradiction between various parts of the report? Recall in this connection the President's Commission's Securing Access to Health Care (1983b): several commentators have noted the disparity between the report's liberal philosophical and factual premises, written by staff scholars, and the conclusion, dictated by the conservative moral and political stance of certain commissioners. A related function of these bodies is to help clarify, through logical analysis, the terms and nature of the debates addressed in their reports. Frequently ethical decision making at all levels, from the bedside to legislative chambers, is confused by pervasive fuzziness in terminology and reasoning. For example, clinicians, journalists, judges, and ordinary people alike have tended to overlook important distinctions (e.g., between somatic and germ-line genetic therapies) or have based decisions and policies on distinctions of dubious merit (e.g., between so-called "ordinary" and "extraordinary" means). Likewise, some debates are muddled by failure to attend to disciplinary distinctions and the resulting confusion of categories. The Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death (1968), for example, mistook the medical criterion of "permanent coma" for an ethical and policy statement about the definition of death. Public ethics bodies should take care to identify separately the various disciplinary perspectives on an issue-e.g., theological, ethical, economic, political, legal, medical, biological, epidemiological-and to give each its due without mistaking one for another.
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Society's Choices: Social and Ethical Decision Making in Biomedicine An important criterion for evaluating the efforts of a public ethics body, then, is the body's ability to advance the ethical discussion by means of logical analysis, including rigorous critique of definitions, arguments, and distinctions-what one committee member has labeled "logic policing." Scholarship Scholarship is another important dimension of intellectual integrity. The work of public ethics bodies must not only be coherent, it must also be competent—that is, based upon the soundest available scholarship. This means, first, that the body's "findings" must be grounded upon solid empirical facts pertaining to the relevant area of technological innovation. A report on fetal tissue transplants, brain death, or genetic screening and therapy must be premised upon state-of-the-art information regarding the current practice and future prospects of relevant technologies. If the membership of a public ethics body lacks this technical knowledge, it must consult with appropriate experts. Members and staff of public ethics bodies should be aware of empirical studies bearing on their topic. Secondly, reports should reflect a thorough knowledge of the interdisciplinary field of bioethics. In addition to being factually accurate and well reasoned, such reports should be based upon an equally state-of-the-art understanding of the public and professional "conversation" surrounding a particular issue. The reasoning and conclusions of the report should reflect an awareness of "the best that has been thought" in the bioethical literature, journals of opinion, newspapers, etc. When policy analysts, scholars, and teachers read an ethics body report that is scientifically and ethically "competent" in this sense, they are much more likely to credit its conclusions as being reasonable, thorough, and fair. In this way, the perception of competency helps to generate the moral authority of a commission. Those responsible for forming public ethics bodies must keep this point in mind as they select members and staff. Although it is reasonable to seek a broad range of cultural, professional, ethnic, and ideological diversity for membership, it is absolutely vital that all of the staff and many of the members of these bodies possess the required expertise in ethics, law, medicine, biology, and related fields. Sound Judgment Sound judgment complements logical analysis and scholarship in an overall assessment of intellectual integrity. Reports should be based not only on good facts, scholarship, and reasoning, but also on the less tangible (and more controversial) factor of judgment. Unlike logic or mathemat-
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Society's Choices: Social and Ethical Decision Making in Biomedicine ics, ethics is not primarily driven by deductive reasoning. Ethical consideration is often "messy," complicated by uncertainty, lack of information, and conflicting values and principles. Ethical "skill" resides not so much in being able to apply a single ethical theory or principle to a set of facts as in the ability to discern the unique particularities of the problem in its social setting, to creatively reframe a question, to reason by analogy, to perceive and acknowledge the interests of affected parties, and to judiciously weigh and balance competing principles and considerations (Jonsen and Toulmin, 1988; Arras, in press). These activities, while loosely connected to deductive logic, are crucial for the successful framing, debate, and resolution of moral problems. Just as individuals must display these skills in concrete moral reasoning, so too must public ethics bodies exhibit them in their reports (Jonsen and Toulmin, 1988). The sorts of judgments called for here can be exceedingly difficult and delicate, and thus very controversial. How heavily should economic efficiency weigh vis--vis equality of opportunity in structuring a health care policy? What will be the impact of the new reproductive technologies on women's identity and role in society, and how should this consideration be measured against the rights of women to do with their bodies as they wish? Any group that comes to terms with such difficult questions, as any serious public ethics body must, will engage conflicting values and interests, and attempt to reach sound judgments. We call 'judicious" those reports that strike an appropriate and fruitful balance between the relevant rights and interests, disciplinary perspectives, and cultural traditions of a given society. Unfortunately, there is no known algorithm for producing reports of this kind. In the final analysis, it is a matter of good judgment honed through years of experience. SENSITIVITY TO DEMOCRATIC VALUES Respect for Affected Parties In addition to "the best that has been thought" on an issue, public ethics bodies should also be attentive to all the significant contributors to the public conversation about an issue. Rather than simply fixing on and advancing their own preferred approach to a problem, members and staff should make an honest attempt to hear all plausible, responsible views. This process is vital for two reasons. First, as John Stuart Mill wisely noted long ago (1859), seemingly marginal ideas may be true, or at least partially true; and even if they are false, the process of having to justify a received view in the face of dissenting arguments will usually strengthen and invigorate it.
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Society's Choices: Social and Ethical Decision Making in Biomedicine Second, public ethics bodies should be attentive to minority or disenfranchised voices, not only because they can enrich our public discourse, but also because sometimes they may be attached to important individual rights or serious religious or cultural concerns that ought to be respected, so far as possible, by public policy. The New Jersey Bioethics Commission, for example, grappled creatively with the problem of Orthodox Jewish concerns over the definition of death. Third, failure to attend to significant minority concerns in the process of policy formation may render implementation of a policy more difficult or even impossible if it requires the cooperation of the affected minority group. The experience of the city of Baltimore in distributing the long-term contraceptive, Norplant®, in the city's predominantly African American public schools is illustrative. Although the facts are in dispute, a number of vocal African American clergymen protested that the planned distribution of Norplant was decided upon without adequate consultation with the African American community, and that it violated the ethical and religious norms of that community. Representation of Diverse Views Concern for affected parties, including minorities, the disenfranchised, consumers, and public interest groups, should manifest itself not only in listening to the experiences and concerns of a wide variety of people, but also in the presence of representatives of such groups within the composition of the public ethics body itself. Some affected parties are difficult to recruit for membership on these bodies (e.g., psychotic individuals, drug users, and various persons suffering from serious addictions), so the bodies should seek not the affected parties themselves, but those who are known to be their dedicated advocates. Also, a seat at the table is sometimes demanded by persons who intend to champion a position and sway a deliberative body to accept it. This is undesirable for a public ethics body, which must be committed to impartiality and willingness to deliberate, yet the views of such parties deserve to be heard. Thus, advocacy should not have a seat, but appreciation and understanding of the advocates should, so as to guarantee that their interests and values will count in the body's deliberations (see the background paper by Bayer in this volume). Open Versus Closed Meetings An important question bearing on the process of a public ethics body's deliberations, as opposed to the substance of its recommendations, concerns the conditions under which meetings will be held. Specifically, the issue is whether these groups should operate in the "sunshine"-that is, in
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Society's Choices: Social and Ethical Decision Making in Biomedicine open public sessions with everything on the record-or in the privacy and confidentiality of closed sessions. Important national-level bodies, including the National Commission and President's Commission, and one state level commission (New Jersey) provide examples of open process, while the ethics work group of the recent Clinton administration health care reform task force and the New York State Task Force on Life and the Law have operated behind closed doors before disclosing their findings to the public. What are the implications for democratic values of these alternative approaches to process? At first glance, it would appear that openness best reflects democratic values. The group is a public body, and its deliberations should be open for all to see and hear. Anyone with a stake in an issue under discussion may attend and, at appropriate times and places, speak his or her mind. Journalists may attend and write about what they see and hear, so that the public will know how the body it is funding conducts its business. Since the body deliberates before an attentive public, the members and staff must eschew the arcane jargon of their respective professions and speak in plain English. And with everything on the record, there will be no "smoke-filled rooms" and no secret deals that cannot be explained to an inquisitive public. The open meeting model is thus especially well-suited to the values of a democratic society. In addition to expressing and reinforcing democratic values, the model of openness may also foster the effectiveness of public ethics bodies, which provide an open forum for all interested parties to witness the deliberations leading to public policy recommendations. Since the members' evolving views could be reported to the public in the print and electronic media, those with differing opinions will have a chance to be heard during this process and, in any case, will not be surprised by the resulting reports. Policy recommendations that pass through this crucible of publicity may be accepted more readily once they are finally published. The virtues of the closed meeting model have more to do with collegiality and efficiency within a deliberative group than with democracy and public education. Perhaps the most common argument for privacy and confidentiality has to do with the fostering of mutual trust and openness among the commissioners and staff. Since these people come together to discuss and decide upon policy questions of great moment and difficulty, they need to keep an open mind. Indeed, they often require a good deal of intellectual elbow room in which to change their minds once confronted with compelling evidence and argument. Arguably, it is easier to do this in private than in public, where the virtues of flexibility and openness to new evidence might be wrongly interpreted as simple fecklessness and inconsistency. Equally important, however, some members of public ethics bodies might be chosen in part because of their ability, not merely to think clearly
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Society's Choices: Social and Ethical Decision Making in Biomedicine about the issues, but also to represent various religious or secular viewpoints. A strong argument can be made that representatives from the clergy, labor, or civil liberties constituencies, for example, will have an easier time crafting inevitable, difficult, and highly sensitive compromises in private than in public. Thus, for example, a Catholic priest might be able to say things in private that he might not be able to say in public. ("As a Catholic and a priest I cannot countenance this kind of reproductive liberty, but as a citizen I will tolerate it.") Instead of spending much of their time "playing to the home audience," members can speak with one another in full candor, concentrating on the task at hand, and setting aside advocacy for calm impartiality. The greatest disadvantage of closed meetings, still speaking on the level of efficiency and effectiveness, is that the public ethics body must do a thorough job of testing the waters with other groups most likely to be affected by or feel strongly about a policy, lest the public be surprised by the body's findings. Groups that feel excluded from the policy process are more likely to react in a spirit of opposition rather than mutual accommodation. Thus, if a body opts for closed meetings, it should make every effort to solicit the views of affected parties during the process of data gathering and policy formation. In sum, it should be noted that closed meetings, while they do not directly advance democratic values, are not necessarily incompatible with them. When public ethics bodies do hold closed meetings, it is important that they also use mechanisms such as open hearings and public release of preliminary findings and recommendations. Conversely, the open meeting, while conforming outwardly to democratic norms, may in practice work around them. Recall that public ethics bodies, whether or not they hold open meetings, are not usually making the decisions; they are usually advisory in nature. In order for their recommendations to go into effect, they often must be acted upon by some publicly responsive and responsible body, like a state or federal legislature. Even if decisions are crafted in private, they remain recommendations that representatives of the people may still accept or reject as they see fit, following public discussion and debate. The open meeting model, on the other hand, may outwardly conform to democratic norms of openness and publicity while deviating from them in private. Many of the issues dealt with by public ethics bodies pose problems of exquisite difficulty, problems generated in part by the presence of strongly held, conflicting views within society. Supposing that consensus is possible on a given question, it will often be achieved by virtue of the willingness of those on opposite sides to make reasonable but painful compromises. This delicate process of finding common ground through moral consensus building is much more likely to succeed in privacy and confidentiality than under the harsh glare of publicity. It may well be,
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Society's Choices: Social and Ethical Decision Making in Biomedicine then, that even within a model built upon the democratic value of openness, much of the real work of compromise and consensus-building takes place away from the public stage. EFFECTIVENESS Preconditions of Effectiveness As noted above, judgments about the effectiveness of any particular public ethics body must be based upon a clear understanding of the group's purpose, the public need to which it responds, and the social context in which it deliberates. Notwithstanding the importance of purpose and context, we can note two preconditions of effectiveness for any group, no matter what its specific charge: communication and authority. Communication First, the body must communicate well with its audience. Its reports and recommendations must be clearly written, trenchantly argued, and comprehensible to as wide an audience as possible. Accordingly, drafters should be self-conscious about their writing style, avoiding wherever possible arcane jargon and academic prose. Since reports are all written in order to effect some change in the reader-either to change beliefs or to encourage alternative actions or policies-they should be written with the specific characteristics of their audience in mind. In a state with a very active and vocal religious presence, for example, drafters of reports should be sensitive, not only to the representation of religious views within the group's process, but also to the way these documents speak to members of religious communities. Reports that respect the sensibilities of their readers will be more persuasive, and hence more effective, than those that do not. Even the most clearly written and persuasive reports can fail to be effective, however, if they are not disseminated to as broad an audience as possible. This means, first, that the reports themselves must be easily accessible to professionals and the general public alike. An adequate number should be printed and made available at reasonable prices to consumers, professional groups, and public libraries. In the future, public ethics bodies should take advantage of new information technologies, such as making documents available through computer networks and on CD ROM. In addition to the documents themselves, members and staff of public ethics bodies should attempt to disseminate the main ideas behind their findings through a wide variety of media, including newspapers, editorial columns, book reviews, radio interviews, professional journals, and public and professional issue forums. If the body is proposing new legislation, its
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Society's Choices: Social and Ethical Decision Making in Biomedicine staff and members should attempt to educate members of the legislature about the issues and about the body's views. Authority The effectiveness or influence of a report is also in part a function of the extent to which the group itself is viewed as an authoritative body, i.e., a group whose recommendations carry weight with policymakers, professionals, and the general public. This kind of authority sometimes derives from the sponsoring body. A public ethics body appointed by the President of the United States or the Governor of New York, for example, automatically assumes a certain stature in the eyes of the community; this might, in turn, lend needed credibility to its recommendations. Authority can also be earned rather than bestowed, either through the individual reputations of members and staff, or through a successful track record of substantive accomplishment. The selection of well-known and respected academicians, community activists, and professionals can lend "clout" to a commission's findings, as can a succession of well-crafted reports, each building on the success of its predecessors. Authority can also be a function of democratic representation. Not every group with a position on a particular controversial issue can be equally satisfied by a body's report, but its recommendations will nevertheless be perceived as authoritative to the extent that all sides have been heard and, ideally, represented in the body's deliberations. Conversely, groups whose voices have been excluded from the process will tend to view the result as a mere power play and, thus, as lacking legitimacy. Different Goals, Different Yardsticks of Success Achieving Consensus The primary function of many public ethics bodies is to achieve consensus on issues that require some sort of public response. Thus, whatever may be the specific goals of a particular body, achieving consensus will usually be an explicit policy objective. As Martin Benjamin explains in his background paper, consensus in public ethics bodies make take a number of forms. One such form is what Benjamin labels "complete" consensus, a term describing the situation in which members of a body agree unanimously on recommendations and on the reasoning behind these recommendations. Not surprisingly, complete consensus is an uncommon outcome for public ethics bodies because questions directed at these bodies are typically controversial and because the membership of these bodies tends to be broadly constituted so as to repre-
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Society's Choices: Social and Ethical Decision Making in Biomedicine sent all points of view. A more common outcome for these bodies is ''overlapping consensus," a term coined by political philosopher John Rawls to characterize a situation in which there is agreement on basic principles among individuals embracing different, and sometimes conflicting, outlooks. In the case of overlapping consensus, people appealing to different principles may agree on a recommendation and at the same time disagree about why they agree. Overlapping consensus is understandably more likely than complete consensus given a population as pluralistic as that in the United States. Compromise, explains Benjamin, is another form of agreement that can occur in public ethics bodies. Central to the idea of compromise is mutual concession for mutual gain; people with opposing positions relinquish aspects of their positions to find some middle ground that is mutually satisfying. Compromise typically occurs in public ethics bodies when members value the body's speaking with one voice more than they value the body's endorsing of the view of a given individual at the price of continued impasse. Compromise is similar to consensus in that it entails a unanimous agreement that the collective body should recommend something rather than nothing. Another form of agreement that can also occur in such a situation is "majority rule." Majority rule represents "procedural" (as opposed to "substantive") consensus in that people have agreed to put forward the recommendation that most members agree on. In all forms, consensus can be valuable to public ethics bodies. Most notably, consensus can be instrumental in obtaining external acceptance and implementation of a body's recommendations, especially (and, some may argue, only) when members of a public ethics body bring to the deliberations an array of different viewpoints on an issue. Observers with different viewpoints may be more likely to agree that a group's recommendation is valid if they perceive that their varied interests have been considered. Consensus in all forms also presents dangers. For example, consensus can be used to obscure deep philosophical issues, in which case the public would be better served by discussion and reflection than by the false resolution provided by a consensus statement. Excessive pressure to reach agreement may also lead to underestimation of risks and objections, ignoring of unpopular viewpoints, failure to consider alternatives or to seek additional information, uncritical acceptance of secondhand information, or failure to exercise sufficient imagination or ingenuity in building consensus or devising compromise (Lo, 1987). Social and political circumstances play a significant role in determining not only the value of consensus, but also the possibility of achieving consensus in any form. A particularly salient factor in public ethics deliberation is the "ripeness" of the issue in question for public resolution. In some cases, a body might merely have to place its imprimatur on a consen-
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Society's Choices: Social and Ethical Decision Making in Biomedicine sus that has been gradually building and is now more or less in place. A good example of this kind of "consensus articulation" might be the President's Commission report on informed consent and truth telling in Making Health Care Decisions (1982). More frequently, however, public ethics bodies are faced with the harder task of actually forging a consensus that does not yet exist. In some instances, a report can help create a societal consensus in spite of some lingering opposition. A good example of this is provided by the New York State Task Force report on Surrogate Parenting (1988). The task force members were initially deeply divided on this issue, but through a process of intense and thorough discussion and debate, they eventually reached a unanimous decision to void surrogacy contracts in New York. Eventually, legislation premised on the task force's recommendations was passed, albeit over the objections of civil libertarians, the surrogacy industry, and some couples and prospective surrogates who wished to engage in this practice. It would probably be accurate to say that a consensus now exists in New York on this issue, although on many such issues consensus is subject to changes in public opinion over time. Consensus has been more difficult to achieve on other issues, such as federal funding for research on fetal tissue transplants. The NIH panel that addressed this question achieved a clear majority in favor of funding such research, but it could not reach consensus. Try as they might to separate the question of fetal tissue research from the ethics and politics of abortion, the panel was ultimately divided on the question, reproducing within itself the divisions haunting the larger society. Likewise, the President's Commission report on Securing Access to Health Care (1983b) faced the daunting task of attempting to create societal consensus on an issue that had divided Americans for decades. Forging ahead in spite of conflicting interest groups (doctors, hospitals, pharmaceutical companies, consumers, etc.), the commission was able to achieve internal consensus on the ethical principles that should govern the process of health care delivery and reform. The problem, according to some critics, was that this consensus was achieved by divorcing health care ethics from health care politics; the resulting consensus was, they claim, too abstract to be compatible with any live option for health care reform. The critics conclude that, in contrast to many of its other distinguished reports, this volume of the President's Commission has had virtually no impact on the public debate over health care reform (Bayer, 1984). Achieving Specific Results Apart from the global objective of forging a consensus on difficult bioethical controversies, public ethics bodies also seek to achieve more
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Society's Choices: Social and Ethical Decision Making in Biomedicine specific goals such as education, influencing of public debate, and stimulation of various government actions, including legislation. These disparate efforts, which may be pursued separately or in concert, must be evaluated according to a variety of different standards. Starting with the obvious, public ethics bodies should successfully discharge the specific mandates that they are given. If a body fails to do what is asked of it, either because of political paralysis (e.g., the BEAC) or inadequate leadership and staffing, it cannot be judged a success. Mandate is relevant to the overall assessment of a public ethics body in another way. Depending on the circumstances, some specific objectives may be more difficult to achieve than others. For example, articulating the contours of an emergent consensus for educational purposes, while a demanding and important task, is not nearly as difficult as drafting legislation on controversial topics for a population divided by fierce ideological and religious differences. Assessments of a body's accomplishments should thus resemble the scoring of a diving judge: assuming comparable quality, a greater number of points should go to the more ambitious and difficult projects. Neither public criticism of a work nor political opposition to its agenda are reliably reflective of inadequacies in its process or product; rather, they may simply represent the cost of doing very difficult business under contentious circumstances (see the background paper by Brody). Assessing the effectiveness of a public ethics body's efforts at educating the public, influencing public opinion, or stimulating government action is a complex task. In large measure, judgments can be made based on criteria discussed above-e.g., intellectual integrity, respect for democratic values, and so forth-but they should also depend on criteria that reflect the nature of specific activities of the body. Thus, educational projects should be judged in part according to pedagogic standards, while judgment of legislative efforts should reflect the quality of the legal craft presented. Examples of highly successful educational ventures include the Danish Council of Ethics, described in Chapter 4, and several of the President's Commission documents, including Splicing Life, Making Health Care Decisions, and Deciding to Forego Life-Sustaining Treatments. Successful legislative and regulatory efforts include the work of the National Commission and the respective reports of the New York State Task Force on Life and the Law and the New Jersey Bioethics Commission on the issue of advance directives. An example of a problematic legislative effort is the New York State Task Force's proposal for a statute on "do not resuscitate" (DNR) orders. While the task force's recommendations and the ensuing legislation can be credited with fostering greater dialogue among patients, families, and physicians, the law's apparent insistence upon emergency cardiopulmonary resuscitation (CPR) in the absence of a documented DNR order has given rise to unanticipated and vexing problems related to the
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Society's Choices: Social and Ethical Decision Making in Biomedicine demands of some families for seemingly futile medical treatment. Likewise, many believe the President's Commission report on Defining Death succeeded for the most part on the legislative front, but failed to advance a cogent rationale for whole-brain death, thereby falling short in its efforts to educate the public and shape public and professional opinion (Gervais, 1989). Can Bioethics Be Disadvantageous? Along with the advantages and benefits of public bioethical deliberation in many settings and at many levels, there are several potential risks. Thus far, these are largely theoretical. No systematic research has looked for the downside of bioethics, and this IOM study committee did not find tangible evidence of their realization. Nevertheless, even hypothetical risks deserve mention, if only as a suggestion for future research, evaluation, and monitoring. We call attention to two concerns: the possibility of diversion and capture of bioethical deliberation by special interests and the lack of proven methodologies and objective standards of evaluation. Diversion and Capture Bioethical deliberation could be useful to special interests in a number of ways. Advocacy groups, for example, are usually perceived as partisan, but, as mentioned at the outset of this report, bioethical deliberation aims at impartiality. To the extent that an advocacy group could influence or capture a body charged with the task of bioethical deliberation, it could increase its influence by lowering the guard of the public. The same is true for sectarian groups, religious or otherwise. Financially self-interested parties are a particular cause for concern. In the new era of health care reform the distinction between financing and provision of care is likely to be further blurred. One result is that the outcome of ethical disputes over clinical medicine affects the bottom line. The current debate over the term "futile," which partly defines the authority of physicians to discontinue life-sustaining care, is a pressing example of how an ethical definition impacts on the cost of medical care. Special interests can subvert the process of bioethical deliberation at every level described in this report. National and state commissions can be lobbied by advocacy and sectarian groups, who can also exert pressure when commission and staff are appointed. The ethics committees of professional societies have evident conflicts of interest when the interests of their members hang in the balance; this presents a credibility problem, but most importantly presents a danger that the ethical problems will be discussed first in terms of the management of risks to the members of the
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Society's Choices: Social and Ethical Decision Making in Biomedicine society. Even at the grassroots level, there are risks of capture. Creation of seemingly-authentic grassroots organizations for the purpose of influencing legislators has become a new tactic in the public relations industry, and there are reports that this is occurring in the health care reform debate. It could also extend to bioethics. The definition of "special interest" is itself a contentious issue. Are advocates for AIDS victims or the mentally ill, or defenders of civil liberties or human life, special interests? How about ethicists themselves, who receive public attention and even employment where bioethics is done? And what of the government itself? When the government is financially implicated, as with the use of "experimental therapies" in entitlement health care programs or in past research abuses where compensation may be due, the government is not a neutral party. Even when the state turns to grassroots bioethics for advice, there are risks: participation may serve a pacification function if the government controls the agenda and participants are confined to debating issues the outcomes of which are unthreatening to the government's interests. A state, for example, might set a low ceiling on health care expenditures and then involve grassroots bioethics groups in deciding how to ration within that budget. None of these considerations demonstrates that the intimate involvement of "special interests" with bioethical deliberation is inherently undesirable or even suspect. Advocates and those with strongly held, sectarian views will be among the closest observers of groups engaged in bioethical deliberation. Their energy and knowledge can be an important asset to these groups and in any case can help to make up the public to whom these groups are accountable. Nevertheless, the need to avoid capture, diversion, and conflict of interest in bioethical deliberation will increase as these deliberations continue to increase in impact. Methods and Evaluation As the United States and other countries turn to applied ethics for enlightenment, a realistic appreciation of what academic ethics can contribute must be fostered. It is possible that some might expect bioethics to deliver something-answers, certainty, the morally correct view, etc.-that it is not equipped to produce. It must be clear that "ethical analysis" is not a single, straightforward method, like algebra or geometry. Different ethicists favor different approaches and methods and claim different philosophical antecedents. No school of thought, such as utilitarianism or contractualism, dominates the discipline. New views, such as feminist and narrative ethics, emerge constantly and even influence many who may not wholly endorse them. Thus, it is unwise to expect from ethicists a method all people would choose to use to unravel any ethical quandaries.
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Society's Choices: Social and Ethical Decision Making in Biomedicine When academic ethicists have moved into the world of public moral discourse, they have often found that one of their skills as philosophers, seeking clarity of meaning in commonly used terms and logic in argumentation, has served better than their ability to explain ethical theory. They disavow the claim to provide answers and offer to help in identifying the assumptions underlying arguments and to point out inconsistencies in reasoning. These skills are often found useful by those struggling to make sense of an ethical problem. Even more useful is the ethicists' insistence that difficult and obscure terms, such as "dignity," "rights," and 'justice," that are used constantly in ethical discourse be examined with care. If an ethical analysis is one that refers in significant ways to these concepts, as we have said, the ability to construct an argument in which they figure meaningfully and forcefully should be prized. However, even if these skills are useful, an ethical argument is not merely logical; it is also substantive, arising from values and norms that are deeply held by individuals. These values and norms are colored by culture, religion, heritage, personal history, preferences, and tastes. Ethicists can often do little more than ask for clarification about the meaning of these values and norms in the minds of those who hold them and ask them to examine the consistency and consequences of holding them. Academic ethics cannot dissolve the differences that might exist between persons and groups at this level. At best, moral discourse can bring such differences to the surface, attempt to discover when they arise from misunderstanding, and invite those who hold them to find practical ways of living together. The best conclusion of an ethical analysis may be the description of alternative views. It may, in some cases, be folly to expect more. At the same time, in the process of examining alternative positions, many considerations are brought to light that illuminate and expand understanding of the moral problem. This, in public moral discourse, is an invaluable byproduct of the bioethicist's presence. It may not be possible to measure the success of this sort of activity with any indisputable standard. Nor is it possible to demonstrate that an ethics commission or committee has produced an analysis that meets some predetermined criteria for sound ethical argumentation. At best, we will rely on such imprecise indicators of success as those mentioned in Chapter 5. Thus, no one can prove that the public has gotten its money's worth out of such an enterprise. Given these difficulties, it may happen that ethics becomes the cover for ideology (as has often happened in history). The current favor in which ethics is held may make it possible, as we said above, for persons and groups with quite sectarian views to disguise their interests under the title "ethics", and it may be difficult for others to discern the difference, until the results are viewed. Even then, clever argumentation may persuade persons to accept a position that they would repudiate, had
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Society's Choices: Social and Ethical Decision Making in Biomedicine they been exposed to alternative reasoning. Thus, while this committee believes that more good than bad can come from public moral discourse, it also recommends prudent caution whenever an ethical analysis of a major problem is proposed. Broad representation of distinct opinions is probably the best antidote. REFERENCES Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death. 1968. A definition of irreversible coma . Journal of the American Medical Association 205:337. Arras, J. In press. Principles and particularity: The roles of cases in bioethics. Indiana Law Journal Bayer, R. 1984. Ethics, politics, and access to health care: A critical analysis of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Cardozo Law Review 6(2):303-320. Gervais, K.G. 1989. Advancing the definition of death: A philosophical essay. Medical Humanities Review 3(2):7-19. Hoffman, D.E. 1991. Does legislating hospital ethics committees make a difference? A study of hospital ethics committees in Maryland, the District of Columbia, and Virginia. Law, Medicine, and Health Care 19:105-119. Jonsen, A.R., and Toulmin, S. 1988. The Abuse of Casuistry: A History of Moral Reasoning. Berkeley, CA: University of California Press. Lo, B. 1987. Behind closed doors: Promises and pitfalls of ethics committees. New England Journal of Medicine 317:46-50. Mill, J.S. 1859. On Liberty. New York: W.W. Norton. New York State Task Force on Life and the Law. 1988. Surrogate Parenting: Analysis and Recommendations for Public Policy. New York, NY: New York State Task Force on Life and the Law. President's Commission (President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research). 1981. Defining Death. Washington, D.C.: U.S. Government Printing Office. President's Commission. 1982a. Making Health Care Decisions. Washington, D.C.: U.S. Government Printing Office. President's Commission. 1982b. Splicing Life. Washington, D.C.: U.S. Government Printing Office. President's Commission. 1983a. Deciding to Forego Life-Sustaining Treatment. Washington, D.C.: U.S. Government Printing Office. President's Commission. 1983b. Securing Access to Health Care. Washington, D.C.: U.S. Government Printing Office. Veatch, R.M. 1993. From forgoing life support to aid-in-dying. Hastings Center Report 23(6):S7- S8. Wikler, D. 1993. Brain death: A durable consensus? Bioethics 7(2/3):239-246.
Representative terms from entire chapter: