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Society's Choices: Social and Ethical Decision Making in Biomedicine The Formulation of Health Policy by the Three Branches of Government LAWRENCE GOSTIN, J.D., L.L.D. (Hon.) Professor and Co-Director, Georgetown University Law Center Johns Hopkins School of Hygiene and Public Health Program on Law and Public Health Modern health policy poses complex legal, ethical, and social questions. The goal of health policy is to protect and promote the health of individuals and the community. Government officials can accomplish this objective in ways that respect human rights, including the right to self determination, privacy, and nondiscrimination. Numerous papers have addressed the question, What is sound health policy?1 However, assessments rarely address the following important questions: Which bodies are best equipped to solve which health policy problems and why? What data do policymaking bodies need? How can that data best be made available to decision makers? The United States is a highly diverse and complicated society. Many groups "weigh in" on significant health policy issues. America's expansive range of policymaking bodies and groups seeking to influence policy render it impossible to offer a systematic and comprehensive analysis of health policy formulation. To make an examination of policy development manageable, I will work from the following assumption, which is partly, but not wholly, valid. I will assume that formal development of health policy is the primary preserve of the three branches of government-the executive, legislature, and judiciary-at the state and federal levels. In practice, many other bodies make policy (such as professional associations or ethics groups through guidelines.)2 This essay focuses on official government policymaking that is legally binding or at least has persuasive force in law. It evaluates the relative strengths and weaknesses of each branch of government with respect to health policy formulation. It also examines sources of
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Society's Choices: Social and Ethical Decision Making in Biomedicine information and influence that help drive policymaking. These include presidential and congressional commissions, task forces and advisory bodies, professional and trade associations, and public interest, consumer, and community-based groups. Although I argue below that health policy is best formulated through rigorous and objective assessment of data, I do not support any restriction on the right of interest groups to publish their views and to appropriately lobby policy makers. A robust constitutional society that values freedom of expression and unrestricted participation in the political process should support a role for interest groups in health policy formulation. It should not censor or fetter the views of those who seek to participate in the process. Yet, the various branches of government should be able to rely on full, objective information and advice based upon sound scientific evidence. This essay will explore some mechanisms for achieving these aims. Health policy encompasses a vast range of issues in health care, public health, and biotechnology. This essay selects illustrations from several areas that, over a period of time, have generated a great deal of policy formulated by each branch of government. These include reproductive rights, the right to die, and mental health. I will also use examples in the fields of health care reform, AIDS, and civil rights of persons with disabilities. CHARACTERISTICS OF SOUND POLICY DEVELOPMENT What factors are important in developing sound health policies? The policies themselves are rarely subjected to scientific scrutiny. Whether society seeks to reform the health care system, to restrict or to expand women's choices to receive an abortion, or to authorize or to criminalize physician-assisted dying, it has no precise means by which to test for the "correct" approach. Health policy decisions often reflect choices between competing values, as well as assessments of available data. Interest groups, including organizations representing various health care professionals, select their values and evaluate data through their own lenses. Clearly, groups comprised of highly expert and well-intentioned professionals often make markedly different decisions about health policy. The New York case of New York State Society of Surgeons v. Axelrod 3exemplifies the difficulty of deciding on one "correct" policy solution to complex health problems. The highest state court considered whether the state health commissioner had correctly categorized HIV infection as a communicable disease. This policy, on its face, appears noncontroversial and subject to neutral assessment. Yet, health professionals strongly split on this issue. Many public health organizations (e.g., the American Public Health Association) supported the commissioner, because the communicable disease classification under New York law adopted a voluntary ap-
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Society's Choices: Social and Ethical Decision Making in Biomedicine proach to controlling the HIV epidemic. However, many medical and surgical organizations (e.g., the American Medical Association) favored the classification of HIV infection as a sexually transmitted disease. This would authorize greater use of compulsory testing, reporting, and contact tracing. What factors should have guided the court's decision between these two sets of respected professionals, who each used reasoned argument and data to argue that their preferred health policy was more effective? Governmental officials need a framework for the development of sound health policy. Adopting the model I set out below does not guarantee that policies will be "effective"; but it does provide a way to filter out obvious biases and to focus attention on scientific data and reasonably objective assessments of arguments. Applying this framework allows interest groups to continue making their voices heard, while it encourages decision makers to obtain information from more neutral sources as well. Several factors are important for developing sound health policies. First, to the extent possible, the policymaker should be objective and dispassionate. This means that decision makers should have no conflict of interest or improper financial or professional incentive. Policymakers should be able to understand the data and arguments presented, to assess them reasonably objectively, and to balance competing values fairly. In many areas of health policy, it is not necessary or even desirable for policymakers to be "experts" themselves, as long as they have access to expert advice. Second, policymaking bodies should be publicly accountable for their decisions. If science or existing societal values do not support a decision, a democratic means for altering the decision is often desirable. Democratic societies thrive on the principle that government action that affects individuals and communities is subject to public review. Periodic elections provide an opportunity for the public to demand explanations and for public officials to articulate and justify their decisions. At least one kind of health policy is not always best made through fully accountable decision makers: the kind that fundamentally affects the human rights of individuals and minority communities. Health policies that seriously burden individual rights to liberty, privacy, and nondiscrimination may require judicial, rather than majoritarian, determinations. For example, a fetal protection policy that excludes all women from unsafe work places to promote the health of infants may violate fundamental rights of nondiscrimination. In Johnson Controls, the U.S. Supreme Court unanimously ruled that a fetal protection policy was discriminatory even though the company presented some scientific evidence that the fetus of a pregnant worker could be at risk.4 Third, the decision making body should be positioned to receive and
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Society's Choices: Social and Ethical Decision Making in Biomedicine to evaluate full and objective information on all aspects of a health policy. Government entities often have access to a great deal of information, but assessing the reliability of that information may be difficult. Judges receive information from legal advocates as well as ''experts" selected by each side of a case; likewise, legislators and executive officials receive information from a wide array of lobbyists and professional groups. Policymakers may recognize that information is coming from a potentially biased source, but may have difficulty weighing the relative value of the information they receive. In addition to receiving information from the wide variety of traditional sources, policymakers need access to objective and complete information from reasonably neutral sources. This includes data and argument on the scientific, ethical, social, and legal aspects of the issue. Decision makers may seek information from one or several different objective sources in order to develop sound health policy. Fourth, policymakers must have well-considered criteria for making the decision. Objective criteria help to guide decision makers in formulating goals, selecting means, and establishing the scientific, social, and ethical parameters for decision making. They also reduce the arbitrariness or biases that often are inherent in decision making processes. I suggest the following steps to guide policymakers:5 Examine the public health interest. Does the proposed policy seek to achieve a compelling health objective? The policymaker should clearly and narrowly define the health purpose(s) of the policy. This protects against biases in decision making, helps communities to understand the policy rationale, and facilitates public debate. Examine the overall effectiveness of the policy. Is the proposed policy likely to be effective in achieving the stated goal(s)? This step requires an assessment of whether the policy is an appropriate intervention to achieve the stated objectives and whether it is reasonably likely to lead to effective action. The policymaker should gather scientific data and apply logic to analyze whether a policy will be effective. Evaluate whether the policy is well-targeted. Is the proposed policy narrowly focused on the health problem? A decision maker should determine whether a policy is narrowly tailored to address the specific health problem, or whether it is over- or underinclusive. Overbroad policies target a population that is much larger than necessary to achieve the health objective. For example, the Bush and Clinton policy that interned or repatriated all Haitian refugees with HIV infection was overbroad, because it affected all of the group, regardless of whether individuals engaged in safe sex or other practices. It adversely affected individuals who did not pose a significant risk of transmission of HIV.6
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Society's Choices: Social and Ethical Decision Making in Biomedicine Identify the human rights burdens. This step requires an inquiry into the nature, invasiveness, scope, and duration of human rights violations. Does the policy interfere with the right to liberty, autonomy, privacy, or nondiscrimination? For example, a policy that requires women to use contraceptives as a condition of receiving welfare benefits might interfere with the right to reproductive privacy and discriminate against women (because the policy does not apply to men) and the poor (because the policy does not affect higher-income women). It may also burden the social and economic rights of dependent children if benefits were withdrawn. Examine whether the policy is the least restrictive alternative. A policymaker should assess whether the health objective could be achieved as well, or better, with fewer restrictions on human rights. This step helps to ensure that a policymaker considers alternatives that may better accommodate societal and individual interests. Fifth, the policymaker should pursue a fair process to arrive at the decision. This requires a careful examination of all relevant facts and arguments. Procedures may include inquisitorial or adversarial hearings, investigations, or other rigorous methods for finding facts and examining arguments. A fair process requires that all persons or organizations that have a legitimate interest in the outcome should have a reasonable means of presenting evidence or arguments. Careful attention to decision making processes achieves both more accurate fact finding and greater equality and fairness to interested individuals and groups. These five elements of policymaking (impartial decision making, accountability, collecting full and objective information, applying well-considered criteria, and following a rigorous and fair process) are often helpful in developing sound health policies. In the following section, I apply these criteria to decision making by each of the three branches of government and assess which bodies are most capable of resolving which health policy problems and why. GOVERNMENT BODIES AND THE CAPACITY TO ADDRESS HEALTH ISSUES EFFECTIVELY The Judiciary In theory, the judiciary provides the least ideal forum for the development of many health policies. Certainly, judges are thought to be impartial and able to assess evidence and arguments from a variety of sources objectively. However, many judges are insulated from public accountability. They are appointed by political figures, often for their political ideologies;
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Society's Choices: Social and Ethical Decision Making in Biomedicine they may have long-term or life appointments; and many are not subject to election or reappointment. Judges usually bring legal skills to the bench; they may lack experience with scientific or ethical thinking. They rarely receive education or training in health issues.7 More importantly, the adversarial nature of judicial proceedings militates against a prominent role for judges in health care policy formulation. The information that judges receive is often partial and incomplete; also, attorneys usually present narrow legal arguments that may not endorse the most desirable policy position. The legal system frequently assumes judges can produce a balanced, accurate decision after hearing two extremist versions of an issue. Yet, each version may be biased or unreliable. Courts lack the tools for assessing the validity of complex scientific or technological evidence and arguments. Courts rely on "expert" witnesses. However, expert witnesses are usually paid for their testimony; this presents a conflict of interest. Also, they may not be the most qualified in their fields, and they may offer opinions that the majority of their peers do not accept and/or that may not have been subjected to adequate scientific inquiry. In Daubert v. Merrell Dow Pharmaceuticals, the U.S. Supreme Court ruled for the first time on the place of scientific evidence in federal proceedings.8 The decision involved an appeal about whether the drug Bendectin caused birth defects. The federal district court and the court of appeals had dismissed the lawsuit, ruling that data concerning birth defects were inadmissible because they were not "generally accepted" in the scientific community. The Supreme Court rejected the "general acceptance" standard that looked to the conclusions of the expert witness, and it took a broader view of the scientific process, with an emphasis on "methods and procedures." The Court established judges as active gatekeepers charged with insuring that "any and all scientific testimony or evidence admitted is not only relevant, but reliable." It asked judges to screen out ill-founded or speculative scientific theories. The Court held that judges should focus on the reasoning or methodology behind scientific testimony, rather than on whether the conclusions of an expert witness have won general acceptance in the scientific community. Speaking for the Court, Justice Blackmun said, "In order to qualify as scientific knowledge, an inference or assertion must be derived by the scientific method" and must have been tested or at least subject to testing. While publication in a peer reviewed journal was not essential, it was relevant.''9 In dissent, Chief Justice Rehnquist, joined by Justice Stevens, warned that the decision would require judges to become "amateur scientists." The Daubert case may well enable judges to assess expert testimony with somewhat greater reliability by reference to the scientific method. But, as Justice Blackmun stated, "There are important differences between the
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Society's Choices: Social and Ethical Decision Making in Biomedicine quest for truth in the courtroom and the quest for truth in the laboratory." These differences still place courts in a uniquely difficult position to assess health policy. Courts must frame their questions under the terms of a case or controversy and the applicable law. Courts do not adopt criteria to help them assess the benefits and harms of a health policy; they only resolve whether a policy is lawful. Also, courts rarely appoint neutral experts. Accordingly, even if they are able to filter out confounded scientific theories, they lack access to the objective expertise necessary for developing health policy. Courts could considerably enhance their ability to assess scientific questions if they systematically appointed neutral experts paid only by the state. Appointed experts could help the court perform a thorough, objective examination of the state of the science, which is essential for sound decision making. Despite these numerous disadvantages courts have been instrumental in developing several important health policies. I will discuss three areas where courts have made major contributions to health policy-reproductive rights, the right to die, and mental health. The important role of the judiciary in the field of reproductive rights has been well discussed. 10 Beginning with the seminal cases of Griswold v. Connecticut 11 and, later, Roe v. Wade,12 the courts for nearly two decades defended the reproductive rights of women. The Supreme Court found a constitutional right to "privacy" even though no mention of the concept appears in the Bill of Rights. The courts used the newly construed right to privacy to prevent the state from interfering with the sale and distribution of contraception.13 The Supreme Court explained that contraception concerns "the most intimate of human activities and relationships."14 The Supreme Court stated that the constitutional promise of privacy protects not only the right to use contraception, but also the right to decide whether to carry a fetus to term.15 It defended a woman's right to choose, and the privacy of her relationship with her physician, through the mid-1980s.16 In recent years, the changing composition of the Supreme Court has led to a significant erosion of reproductive rights and medical privacy. The Court upheld the authority of the state to restrict the use of public employees and facilities for the performance of nontherapeutic abortions.17 The Court also upheld a Department of Health and Human Services regulation prohibiting federally funded family planning clinics from counseling or referring women for abortions.18 The DHHS regulation became known as the "gag rule" because it prohibited funded programs from providing women with objective clinical information about reproductive choices. In Planned Parenthood of Southeastern Pennsylvania v. Casey,19 the Supreme Court changed the legal standard by which to evaluate restrictions on abortion. This decision will have a profound effect on access to reproductive health
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Society's Choices: Social and Ethical Decision Making in Biomedicine care.20 It will allow states to place restrictions on access, such as requirements that abortions be performed in hospitals that are not publicly funded; restrictions on the timing, such as waiting periods for abortions; and mandatory justification and information requirements, such as limiting the reasons women can use for an abortion and requiring the doctor to present state-approved information.21 This shift in the composition and decision of the Supreme Court vividly shows how changeable the courts can be in assessing health policy and defending human rights.22 Many argue that the development of the right to privacy from 1965 through the early to mid-1980s had profound, positive effects on reproductive policy. Neither the legislative nor the executive branch produced similarly clear and consistent policies on contraception and abortion. Current efforts in Congress (e.g., the Freedom of Choice Act) and in state legislatures to protect reproductive privacy use the same "fundamental rights" analysis that the Supreme Court employed in Roe.23 Courts also developed thoughtful rulings on surrogate motherhood 24 and artificial reproduction that some state legislatures are emulating. 25 The judiciary has also displayed leadership in formulating policy around the right to withdraw life-sustaining treatment, beginning with the Karen Ann Quinlan decision of the New Jersey Supreme Court in 1976.26 While the U.S. Supreme Court has rarely extended the right to privacy beyond reproductive decisions,27 many state courts have interpreted the federal and state constitutions as conferring a right to refuse life-sustaining medical treatment.28 The court in Bouvia held that a patient's decision to forego medical treatment "is a moral and philosophical decision that, being a competent adult, is hers alone."29 The right to refuse medical intervention has been extended to persons who have become incapable of making a decision 30 and those who have always been incapable.3l The courts have almost uniformly respected the decisions of surrogates, particularly family members, in making choices for persons who could not decide for themselves. 32 The courts have defined the circumstances under which treatment could be terminated with greater specificity over the years. Most courts have rejected the distinction between withholding and withdrawing treatment, between ordinary and extraordinary treatments, and between terminally ill and nonterminal cases. The courts have protected the right to refuse treatment in cases involving ventilators and blood transfusions, as well as those involving nutrition and hydration. 33 Many courts have set out procedures and criteria for decision making ranging from second opinions, prognosis, and ethics committees 34 to ombudsmen.35 Despite the courts' own insistence that legislatures would make these decisions better, the judiciary has formulated much of the policy surrounding termination of life-sustaining treatment. Only recently has the locus of
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Society's Choices: Social and Ethical Decision Making in Biomedicine policy begun to shift to federal and state legislatures. The Supreme Court's decision in Cruzan provided an impetus for the move to legislative policymaking on the right to die.36 In Cruzan, the U.S. Supreme Court upheld the decision of the Missouri Supreme Court to adopt a clear and convincing evidence standard for the termination of life-sustaining treatment. The Supreme Court never mentioned the word "privacy" in its decision. Instead, it found that competent patients had a "liberty interest" to refuse treatments. The Court did not view the individual's liberty interest as "fundamental''; this suggested that the state interest in preserving life could prevail. Legislatures began to conceive of ways in which the decisions of persons to refuse life-sustaining treatments could be more routinely respected. In her concurrence in Cruzan, Justice O'Connor gave some guidance by suggesting that the Court might in the future constitutionally protect the advance directives of patients. In 1990, Congress enacted the federal Patient Self-Determination Act, with an implementation date of December 1, 1991. The Act conditions health care providers' receipt of Medicare or Medicaid dollars on their provision of written information at the time of admission about patients' rights under state law to accept or refuse medical treatment and to formulate advance directives. Since Cruzan, state law on advance directives has increasingly been crafted by legislatures. The field of mental health policy shows a similar pattern of judicial leadership followed by legislative enactment. During the 1970s, the courts began a process that would transform mental health policy in America. The courts struck down mental health statutes as unconstitutionally vague and insufficiently related to the states' valid interests in protecting the public from harm.37 The courts refused to allow broad discretionary language in civil commitment statutes if it described psychiatric decision making purely in medical terms, such as "mentally ill," "in need of treatment," personal "welfare," or "best interests." Nor would the courts allow civil commitment in the absence of rigorous due process including the right to notice, counsel, and a hearing. 38 The courts constitutionally required the standard of proof at civil commitment hearings to be more than a preponderance of evidence; typically, commitment demands "clear and convincing evidence."39 More recently, the courts also developed standards for refusal of treatment by persons with mental illness.40 Mental health legislation in America has been fundamentally reformed to comply with the constitutional requirements set by the judiciary. I do not argue here about whether judicial policies in these three areas have been effective. Some have claimed that abortion cases too rigidly adhered to the scientifically and socially questionable trimester framework; that the right to die cases gave insufficient weight to the need to preserve life; and that the mental health cases led to a decade of deinstitutional-
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Society's Choices: Social and Ethical Decision Making in Biomedicine ization that increased human suffering, homelessness, and violence in America. I do observe that the judiciary has had a profound, lasting effect in these and other areas of health policy, which other branches of government have emulated. What factors made these issues particularly suited for judicial decision making? At least one of three factors was common to each of these areas of health policy. First, each issue involved emotionally charged social questions that divided the public. The right to life is perhaps the single most controversial and enduring problem in health policy formulation. The issue of preservation of life is central to both abortion and termination of life-sustaining treatment. While the mental health cases do not engender the same emotion, they still involve sharp differences between professionals and civil libertarians about the right of society to confine and to treat persons with mental illness. Indeed, the culture of the time influenced much of the discourse, and ultimately, litigation. Rosenhan's " On Being Sane in Insane Places,"41 Szasz's "Myth of Mental Illness,"42 and Goffman's "Asylums" 43 each symbolized the antipsychiatry movement of the day. Courts in some ways are uniquely suited for dealing with such areas of social divisiveness. They can often remain aloof from the controversy and rely on "neutral'' legal doctrine. The legislative and executive branches of government are more vulnerable to interest groups, lobbyists, and financial pressures. The second factor common to at least one of these health issues is the absence of formal policy existing at the time of the litigation. When the New Jersey Supreme Court was deciding Karen Quinlan's case, there was little legislative or executive guidance on the termination of life-sustaining treatment. The court was simply deciding the case with which it was presented. It had to craft a reasoned decision based upon traditional legal and ethical principles: respect for persons, autonomy, and privacy. The courts that followed Quinlan had to look to prior judicial decisions in other jurisdictions because the legislatures, for the most part, still had not acted.44 The courts in the right-to-die cases appeared to be filling a vacuum in policy. This second factor suggests that the courts are more likely to intervene in areas where there was lack of consensus or established policy. Prior to 1973, some liberalization in the scope of lawful abortions was evident in several legislatures, but few statutes approached the breadth of the privacy right decreed by the court in Roe. Most of the existing legislation was haphazard and inconsistent. It often did not balance individual interests with those of the state.45 It is an open question as to whether the Supreme Court would have intervened in quite so decisive a manner if more settled policy on abortion rights had existed. The Court moved, at least in part, because of the absence of a national consensus on the issue. Judicial decisions in mental health cases, unlike abortion or right-to-
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Society's Choices: Social and Ethical Decision Making in Biomedicine die cases, did not simply fill a policy vacuum. At the time of this litigation, all 50 states had civil commitment statutes that were fairly uniform in content. The courts appeared to usurp the field by requiring the legislatures to enact new statutes to comply with constitutional guarantees. The judiciary, then, has sometimes acted as a pathfinder when there was a paucity of established policy. In an atmosphere of uncertainty in health policy, the courts can answer questions on a case-by-case basis. It is only after years of case law that a consistent policy emerges and gains public acceptance. At that time, the legislature can begin its work in clarifying and codifying policy choices. A third characteristic shared by all three health issues is the presence of a fundamental claim to human rights by individuals and groups. These human rights claims weighed heavily in the balance of scientific, social, and ethical issues. In the fields of reproductive rights and the right to die, the courts repeatedly echoed the theme of individual choice, self-determination, and privacy. In the mental health cases, the courts emphasized fundamental claims to due process and liberty. This third factor (i.e., the central importance of human rights) is likely to be the most important in deciding whether the courts will, or should, intervene in significant cases of health policy. Unlike the executive and legislative branches of government, the courts are suited to protect the rights of individuals or groups. They are less concerned with pleasing the majority and less likely to give in to majoritarian pressures that may oppress vulnerable individuals or groups or restrict their rights. The judiciary also has appropriate criteria and procedures for ensuring the protection of individual rights. Courts can invalidate oppressive state action through constitutional review, and can protect minorities through civil rights decisions.46 While the legislature or executive may focus more strongly on using science to promote the health of the community, these two branches sometimes overlook or insufficiently weigh human rights concerns. Where human rights become a defining value in health policy, courts may be the most appropriate body to make decisions. The Legislature If the judiciary is the least suited branch of government to develop health policy in many areas, the legislature may be the most suited. The legislature is thought to be impartial and publicly accountable; it has the capacity to collect full information from a wide range of objective sources; part of its mandate is to protect and promote the health of the public; and it has the power to engage in a lengthy and deliberative process in enacting legislation. Classic American federalism suggests that the legislature possesses spe-
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Society's Choices: Social and Ethical Decision Making in Biomedicine often involves highly complex technological issues. Congress can frame health policy questions that are most useful to its legislative agenda and receive timely assistance. The OTA can issue contracts and assemble interdisciplinary working groups to obtain specialized information. The OTA has provided extensive data and analysis to Congress in numerous areas of health policy ranging from the human genome to HIV disease54 and tuberculosis.55 Congress can also request studies from the U.S. General Accounting Office on health policy issues. Recent reports of the General Accounting Office include studies of organ transplantation,56 needle exchange programs,57 and Medicaid.58 While legislatures rarely operate according to clear, written criteria, their constitutional mission to preserve the health, safety, and morals of the community sets the parameters for their activities. Moreover, legislatures can require committees to observe the criteria for sound decision making that have already been suggested-i.e., to establish policies that are effective, well-targeted, and minimally burdensome of human rights. Legislatures have the capacity to follow a rigorous, fair decision making process. Legislative hearings can be thorough and expansive in ways that are simply not feasible in other branches of government. While judicial hearings are adversarial in nature, legislative committees may use many methods to gather information and hear from interested parties. Legislatures may provide forums to review societal perspectives, as Congress did in the hearings involving Justice Clarence Thomas; they also can invite interest groups, consumers, professionals, and academics to present testimony. In sum, legislatures can garner a massive amount of information in open, impartial ways that make them strong candidates for sound policymakers. There are, of course, major determents to legislative policymaking. First, most legislators belong to political parties whose partisan character may lead them to view policy issues through a narrow lens. Rather than independently seeking the most effective health policy, leaders of a political party may powerfully influence legislators. For example, the 1992 presidential candidates spent a great deal of time discussing the "gridlock" in Congress. On almost every policy issue of consequence, political parties found little common ground. Indeed, when particularly divisive issues such as abortion policy or fetal tissue research are at stake, entire pieces of legislation can be thwarted through noncooperation, filibusters, and threats of a presidential veto from the opposing political party. Second, legislators may be indebted to particular individuals and groups that helped them to get elected. Financing modern political campaigns is extraordinarily expensive. Legislators may have to think long and hard before making decisions against the interests of large contributors. For example, substantial contributions from the pharmaceutical, tobacco,
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Society's Choices: Social and Ethical Decision Making in Biomedicine agricultural, or automobile industries can strongly influence legislators' judgments on policies affecting the public health and safety. Third, legislators are highly sensitive to well-organized interest groups. These include professional associations such as the American Medical Association (AMA) or American Bar Association (ABA). These organizations are perceived to be able to influence a large number of voters. A legislator may be concerned as much with the way he or she will be viewed by powerful interest groups as with the impact of the health policy under consideration. Many health policy analysts, for example, believe that Medicare benefits should be modified to provide more cost effective coverage for persons who can least afford health insurance. Yet, this is a politically difficult area to tackle because of the influence of organizations representing older populations. Similarly, legislators often give deference to the plaintiff's bar on medical malpractice or the AMA or health insurers on health care reform. Fourth, legislators frequently operate on a limited horizon. Legislators are elected for a short term, and may not be interested in the longer term benefits of a policy. They may, for example, be concerned more with the immediate electoral problems caused by increased taxes necessary to provide universal health care coverage, than with the long-term health and financial benefits of reforming the health care system. The Americans with Disabilities Act (ADA) provides an illustration of a statute that fulfills all of the promise of the legislature as an effective policymaker. While the ADA provides a strong weapon against discrimination against persons with disabilities, its impact on the health care system is less well understood. Several areas of impact on the health care system have been observed by courts and commentators: the duty of health care professionals to treat patients with disfavored health conditions such as AIDS, the duty not to discriminate in health care benefits coverage, and the duty to exercise compulsory public health powers fairly.59 The ADA was born of a remarkable coalescence of the interests of a large and diverse group of people. The act was supported by groups representing persons with disabilities, civil liberties groups, AIDS advocacy organizations, and mental health associations. It was supported on a broad bipartisan basis with leadership from Republicans (e.g., Senators Dole and Weicker) as well as Democrats (e.g., Senator Kennedy and Congressman Waxman). Notably, it had the support of President Bush, who signed legislation passed by a Democratic Congress.60,61 The ADA is the latest in a series of statutes enacted by Congress that proscribe discrimination on the basis of race, sex, age, and disability. These accomplishments in the field of civil rights are widely perceived as critically important policies that have been the preserve of the legislative branch of government. More recently, many state legislatures have enacted antidis-
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Society's Choices: Social and Ethical Decision Making in Biomedicine crimination statutes to protect persons with HIV infection or disease 62 or persons with genetic traits or conditions.63 What are the qualities of the legislative process that made it possible to achieve the social good that has emerged from civil rights legislation? And why has the legislature had such difficulty replicating this success in other areas where social change is equally imperative, such as health care reform? The success of legislatures in the field of civil rights is largely attributable to the growing consensus in society about the evils of discrimination based upon personal characteristics such as race, sex, disability, or health status. Historians may well observe one striking feature in the passage of the ADA. There was widespread consensus around the antidiscrimination principles inherent in the legislation. The legislative debates literally rang with the virtues of equal opportunity and human rights for persons with disabilities in society;64 diverse interest groups came together and worked in a coordinated fashion in their lobbying efforts; and there was an absence of a vocal and organized opposition. Even the individuals and groups that would have been expected to stand in the way of these changes refrained from doing so. Conservative persons in Congress never actively opposed the legislation, but narrowed their objections to certain "undeserving" groups such as drug users, homosexuals, and persons with psychiatric disorders involving antisocial behavior or gender identity.65 They also objected to parts of the ADA that fed directly into the fears of the public, even though those fears were not supported by the epidemiologic evidence. Considerable congressional debate was engendered concerning food handlers with HIV infection. A compromise was ultimately reached to direct the Secretary of Health and Human Services to prepare a list of food-borne diseases where persons could be restricted from working in the food service industry.66 Predictably, when the list was published a year after the passage of the ADA, HIV disease was not mentioned by the Secretary.* The absence of significant opposition to the ADA was due, in part, to the fact that in wider society it was becoming culturally and socially inappropriate to vocally oppose civil rights for persons with disabilities. * The desire to override antidiscrimination principles for persons infected with HIV continued in Congress after the enactment of the ADA. The Kimberly Bergalis Act required states to determine whether HIV-infected health care professionals could safely practice invasive, exposure-prone procedures. The statute was passed despite the opposition of virtually all of the national medical and public health associations. Similarly, Congress added HIV infection to the list of dangerous contagious diseases that would allow compulsory screening and exclusion of travelers and immigrants. The statute was passed against the advice of the Department of Health and Human Services.
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Society's Choices: Social and Ethical Decision Making in Biomedicine The experience of the passage of the ADA suggests that the legislature can most effectively act in situations where it is implementing the will of society, where pressure groups act in unity, and the opposition is muted. This is true majoritarian politics. When it works, it can provide powerful and lasting benefits to society. The problem, however, is that legislative processes rarely work in an atmosphere of consensus, especially in the highly controversial health policy arena. In health policy, the issues are often bitterly contested and divisive. One disease may be pitted against another. For example, legislators may be lobbied to divide scarce resources between competing diseases such as AIDS, tuberculosis, cancer, heart disease, and mental illness 67 or between competing segments of the health care industry such as prevention, acute care, long-term care, and research. The interests of patients may be pitted against those of health care professionals. A pertinent case is the ongoing struggle between doctors and patients for the "right to know" the HIV status of the other. Struggles between generations are even apparent as debates ensue about who should bear the financial burden of paying for health care and who should receive the benefits-the young versus the old, the poor versus the rich, the healthy versus the sick. A classic example of legislative failure to produce a badly needed public benefit is in health care reform.68 Health care reform, on its face, ought not to be inordinately difficult for legislatures. A substantial majority of Americans express dissatisfaction with the health care system.69 Indeed, both candidates in the 1992 presidential campaign supported health care reform.70,71 The current system has failed to provide universal access to health care with an equitable sharing of benefits and burdens. An estimated 37 million people do not have health care coverage, with many more people inadequately covered.72 Disparities in access to health care and poor health outcomes have been shown on grounds of socioeconomic status,73,74 race and ethnicity,75 and gender.76 The current system has also failed to control escalating health care costs relative to health care expenditures in other countries. The United States spent more than $666 billion on health care in 1990, approximately 12 percent of the nation's gross national product.77 Health care expenditures are projected to reach $1.6 trillion, between 16 and 18 percent of the gross domestic product by the end of the decade if effective controls are not instituted.78 Given the fact that the current system appears not to serve the interests of large numbers of individuals, as well as the fiscal interests of American society, one would have expected Congress to act. Prominent members of Congress have worked on commissions and other initiatives to accomplish that objective,79 and congressional committees have conducted many hear-
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Society's Choices: Social and Ethical Decision Making in Biomedicine ings. The gridlock can probably be attributed to the powerful interest groups whose vision of reform differs substantially. Organized medicine is concerned with limits on the doctor's income and freedom to practice; the organized bar is concerned about malpractice reform; the health insurance industry is concerned about its survival and the ability to continue traditional underwriting practices; consumers worry about loss of the absolute right to choose their doctor; and the business community and taxpayers are concerned about the cost. The ability of Congress to rise above the strong competing interests and influences to provide a fair and effective health care system remains in doubt. The Executive The executive branch of government brings to health policy formation many of the same benefits as the legislature. The executive branch can be both objective and accountable. Certainly, the chief executive is a political party figure subject to many of the ingrained ideologies that many politicians bring to their decision making. Yet, as the head of his or her party, the chief executive may be free to divert from party political positions or to change those positions. The executive branch, moreover, usually has many agencies concerned with health and social policy. Individuals who work in those agencies often are not connected to political parties and bring a wide body of knowledge and expertise to their fields. This creates enormous possibilities for impartial, accountable, and comprehensive assessments of health policy. In many ways, the executive branch of government is in the best position to marshall all of the evidence, data, and reasoning necessary for the formulation of sound health policies. The U.S. Department of Health and Human Services, for example, has an unequaled capacity to obtain data in areas of clinical and policy research (e.g., the National Institutes of Health and the Agency for Health Care Policy and Research), prevention and public health strategies (e.g. the Centers for Disease Control and Prevention), and financial impacts (e.g., the Health Care Financing Administration). While the executive branch does not hold hearings like the judiciary or the legislature, it can solicit written and oral comment from organizations and experts. It frequently holds open meetings to discuss public health strategies. 80 It can, moreover, receive rigorous assessments of difficult health science and policy questions through contracts and grants with research institutions. Presidents and governors can use their agencies wisely to achieve substantial health benefits for the public. The Human Genome Initiative, for example, was designed not only to answer many of the essential scientific
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Society's Choices: Social and Ethical Decision Making in Biomedicine questions about the detection, prevention, and treatment of genetic conditions, but also the ethical, social, and legal questions.81 The executive branch of government has considerable power to develop, shape, and expand health policy through executive orders, rule making, and interpretive guidance. The Equal Employment Opportunity Commission (EEOC), for example, has been active in pursuing claims under federal disability law. The EEOC has recently issued interpretive guidance suggesting that the ADA prohibits discrimination in health insurance coverage against particular individuals or groups with specific diseases. 82 Despite the significant potential for the executive branch to develop health policy with all the benefits of the best research and rigorous assessments, it has frequently failed to follow sound scientific recommendations. This has resulted in administrations ignoring or rejecting the advice of scientific and policy commissions. It has also resulted in substantial swings in health policy from one administration to the next. The probable reason for discounting the objective advice of its agencies and commissions is that the executive, perhaps more than any other branch of government, is ideologically driven. Many illustrations can be found to demonstrate the fragility of the commitment of administrations to neutral scientific assessments of health policy. The Reagan and Bush administrations both refused to allow federal funding for fetal tissue research in spite of the recommendation of an NIH advisory panel. President Reagan barely acknowledged the work of the President's Commission on AIDS. The Commission reported after extensive investigation, and made hundreds of recommendations. The only recognition the Administration gave to the 200-plus-page Commission report was a short press release. The Commission's central recommendations were never implemented.83 Later, the National Commission on AIDS complained vehemently about being ignored by President Bush. 84 Very few of the recommendations made in several reports were ever seriously considered in the White House.85 Administrations sometimes act in ideological ways that anger virtually all of the health policy community. In McGann, a federal court of appeals held that an employer who reduced an employee's health coverage from $1 million to $5,000 after he made claims for HIV disease had not unlawfully discriminated under ERISA.86 Many public health and medical organizations filed amicus curiae briefs asking the Supreme Court to overturn the decision. Yet, the court decided not to hear the case largely because the Bush Administration opposed the appeal. 87 The disrespect administrations sometimes show for scientific advice is also illustrated by substantial swings in health policy on controversial issues. The behavior of successive administrations on reproductive health
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Society's Choices: Social and Ethical Decision Making in Biomedicine policy provides a vivid illustration. For a dozen years Republican administrations developed and maintained highly restrictive policies on abortion rights: (i) in a 1984 order known as the "Mexico City Policy," President Reagan prohibited the United States from providing foreign aid to family planning programs that were involved in abortion-related activities; (ii) in memoranda in 1987 and 1988, the National Institutes of Health placed a moratorium on federal funding of research involving the implantation of fetal tissue from induced abortions; (iii) by memoranda of 1987-1988, the Department of Defense banned all abortions at U.S. military facilities, even where the procedure was privately funded; (iv) in a 1988 regulation known as the "gag rule," the Department of Health and Human Services prohibited family planning clinics funded under Title X of the Public Health Service Act from counseling or referring women for abortion; and (v) in two Import Alerts issued in 1988-1989, the Food and Drug Administration excluded Mifepristone (RU-486) from the list of drugs that individuals can import into the United States. On the twentieth anniversary of Roe v. Wade, January 23, 1993, President Clinton signed five memoranda that repealed all five of these policies-reversing a dozen years of policy on reproductive rights and medical privacy. The result of these sharp changes in policy by the executive is that America never seems to attain a settled policy on the issue of reproductive rights. The strongly ideological positions of the executive branch often allows it to lose sight of the questions that are central to the development of sound health policy-will the policy be effective in protecting and promoting the health of the public and will it adequately safeguard human rights? CONCLUSION As this paper is being written, the President's Task Force on National Health Care Reform, chaired by the First Lady, has completed its work, and the President has sent a bill to Congress for systematic reform of the health care system.88 The President and the First Lady have compared this initiative of the executive to the Manhattan Project and the New Deal. The President was able to marshall the resources of several hundred experts within and outside of government to fundamentally reform the financing, organization, and delivery of health care in the United States. This will provide a unique opportunity to observe the workings of two powerful branches of government on a health policy issue that can produce enormous social good for millions of Americans by enhancing their access to care, reducing inequalities, and allocating benefits and burdens more equitably. Will the President and Congress jointly develop a new health care system that is beneficial and just? Or will they become stalled in
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Society's Choices: Social and Ethical Decision Making in Biomedicine conflict and paralyzed by competing interest groups and ideologies? As years of careful thinking and writing on health care reform turns into a season of political debate and decision, the strengths or inadequacies of the two branches of government may become painfully obvious. NOTES 1. E.g., National Research Council. AIDS: The Second Decade. Washington, D.C.: National Academy Press, 1990. 2. E.g., Hastings Center. Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying. Briar Cliff Manor, N.Y., 1987. 3. New York State Society of Surgeons v. Axelrod, 77 N.Y.2d 677 (1991). 4. International Union, UAWv. Johnson Controls, Inc., 499 U.S. 187 (1991). 5. A considerably more detailed ''human rights impact assessment" is contained in Gostin L., Lazzarini, Z., Public Health and Human Rights in the AIDS Pandemic. Geneva, Switzerland: World Health Organization, in press. 6. Haitian Centers Council, Inc., v. Sale, 823 F. Supp. 1028 (E.D.N.Y. 1993). 7. In 1993, the U.S. Public Health Service conducted the first PHS workshop for state judges on tuberculosis and AIDS. See Gostin, L., Lazzarini, Z., Tuberculosis, the Law, and Public Health. Agency for Health Care Policy and Research, in press. 8. Daubert v. Merrell Dow Pharmaceuticals, 113 S.Ct. 2786 (1993). 9. Greenhouse L. Justices put judges in charge of deciding reliability of scientific testimony. New York Times, June 29, 1993: A13. 10. Butler, J.D., Walbert D.F., eds. 1992. Abortion, Medicine, and the Law, 4th ed. New York: Facts on File. 11. Griswold v. Connecticut, 85 S.Ct. 1678 (1965). See also Loving v. Virginia, 388 U.S. 1(1967); Eisenstadt v. Baird, 405 U.S. 438 (1972). 12. Roe v. Wade, 410 U.S. 113 (1973). 13. Griswold v. Connecticut, 85 S.Ct. 1678 (1965). 14. Carey v. Population Senices International, 97 S.Ct. 2010 at 2016 (1977). See Eisenstadt v. Baird, 405 U.S. 438 (1972). 15. Roe v. Wade, 410 U.S. 113 (1973). 16. See, e.g., City of Akron v. Akron Center for Reproductive Health, 462 U.S. 416 (1983); Thornburgh v. American College of Obstetrics and Gynecologists, 476 U.S. 747 (1986). 17. Webster v. Reproductive Health Services, 492 U.S. 490 (1989). 18. Rust . Sullivan, 111 S.Ct. 1759 (1991). 19. 112 S.Ct. 2791 (1992). 20. Benshoof, J. Planned Parenthood v. Casey: The impact of the new undue burden standard on reproductive health care. JAMA 1993:269:2249-2257. 21. Dellinger, W. Abortion: The case against compromise. In: Butler,J.D., Walbert, D.F., eds. Abortion, Medicine, and the Law, 4th ed. New York: Facts on File, 1992:90-98. 22. Van Alstyne, W.W. The cycle of constitutional uncertainty in American abortion law. In: Butler, J.D., Walbert, D.F., eds. Abortion, Medicine, and the Law, 4th ed. New York: Facts on File, 1992:79-89. 23. Benshoof, op. cit. 24. In re Baby M., 217 N.J. Super. 313 (1987), rev'd in part, 525 A.2d 1128 (1988). 25. Yoon, M. The Uniform Status of Children of Assisted Contraception Act: Does it protect the best interests of the child in a surrogate arrangement? American Journal of Law and Medicine 1990, 16:525-553. 26. In re Quinlan, 70 N.J. 10, 355 A.2d 647, cert. denied sub. nom., Garger v. New Jersey, 429 U.S. 922 (1976).
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Society's Choices: Social and Ethical Decision Making in Biomedicine 27. See Bowers v. Hardwick, 106 S.Ct. 2841 (1986). 28. See, e.g., John F. Kennedy Memorial Hospital, Inc. v. Bludworth, 452 So.2d 921 (Fla. Sup. Ct. 1984); In re Guardianship of Grant, 109 Wash. 2d 545, 747 P.2d 445 (1987), modified 757 P.2d 534 (Wash. July 15, 1988); Rasmussen v. Fleming, 154 Ariz. 207, 741 P.2d 674 (1987); Brophy v. New England Sinai Hospital, Inc., 398 Mass. 417, 497 N.E.2d 626 (1986). See Gostin, L. and Weir, R., Life and death decisions after Cruzan: Caselaw and standards of professional care. Milbank Quarterly 1991, 69:143-173. 29. Bouvia v. Supreme Court (Glenchur), 225 Cal. Rptr. 297 (Ct. App. 1986). 30. E.g., In re Guardianship of Browning, 568 So.2d 4 (Fla. Sup. Ct. 1990); In re Severns, 425 A.2d 156 (Del. Ch 1980); In re Torres, 357 N.W.2d 332 (Minn. 1984). 31. E.g., In re Guardianship of Grant, 747 P.2d 445 (1985), modified, 757 P.2d 534 (Wash. July 15, 1988); Superintendent of Belchertown State School v. Saikewicz, 370 N.E.2d 417 (Mass. 1977); In re Eichner (In re Storar) 438 N.Y.S.2d 266 (1981). 32. E.g., In re Guardianship of Ingram, 689 P.2d 1363 (Wash. 1984); In re Guardianship of Hamlin, 689 P.2d 1372 (Wash. 1984). 33. See Rhoden, N.K. Litigating life and death. Harvard Law Review 1988, 102:375-446. 34. See, e.g., In re Jobes, 529 A.2d 434 (N.J. 1987); In re Guardianship of Hamlin, 102 Wash.2d 810 (1984). 35. In re Conroy, 486 A.2d 1209 (NJ. 1985); In re Peter, 529 A.2d 419 (NJ. 1987). 36. Cruzan v. Director, Missouri Department of Health, 110 S.Ct. 2841 (1990). 37. E.g., Lessard v. Schmidt, 349 F. Supp.1078 (E.D. Wis. 1972); Johnson v. Solomon, 484 F. Supp. 278 (D. Md. 1979). 38. E.g., Vitek v. Jones, 445 U.S. 480 (1980); Colyar v. Third Judicial Dist. Court, 469 F. Supp. 424 (D. Utah 1979); Suzuki v. Yuen, 617 F.2d 173 (9th Cir. 1980). 39. Addington v. Texas, 441 U.S. 418 (1979). 40. E.g., Washington v. Harper, 110 S.Ct. 1028 (1990); Mills v. Rodgers, 457 U.S. 291 (1982). 41. Rosenhan, D.L. On being sane in insane places. Santa Clara L. Rev. 1973; 13:379. 42. Szasz, T.S. The Myth of Mental Illness: Foundations of a Theory of Personal Conduct. 1961, rev. ed. 1974. 43. Goffman, E. Asylums: Essays on the Social Situation of Mental Patients and Other Inmates. Garden City, N.Y.: Anchor Books Doubleday, 1961. 44. The courts did have a growing body of ethics literature in this area to guide its decisions, notably the President's Commission report. 45. George, BJ. State legislatures versus the Supreme Court: Abortion legislation into the 1990s. In: Butler, J.D., Walbert, D.F., eds. Abortion, Medicine, and the Law, 4th ed. New York: Facts on File; 1992:3-77. 46. See Gostin, L. The AIDS Litigation Project: A national review of court and human rights commission decisions, Part II: Discrimination. JAMA 1990; 263:2086-2093. 47. For a comprehensive examination of the constitutional role of federal judicial, legislative and executive power, see Tribe, L. American Constitutional Law, 2d ed., Mineola, N.Y.: Foundation Press, 1988. 48. Jacobson v. Massachusetts, 197 U.S. 11 (1905). 49. Marbury v. Madison, 5 U.S. (1 Cranch) 137 (1803). 50. Tucker v. State, 35 N.E. 2d 270, 291 (Ind. 1941). 51. American Medical Assn. v. Heckler, 606 F. Supp. 1422, 1439 (S.D. Ind. 1985). 52. National Commission on AIDS. AIDS: An Expanding Tragedy, Final Report. Washington, D.C.: 1993. 53. U.S. Congress, Office of Technology Assessment. Genetic Monitoring and Screening in the Workplace. Washington, D.C.: OTA, 1990. The Role of Genetic Testing in the Prevention of Occupational Disease. Washington, D.C.: 1983. 54. U.S. Congress, Office of Technology Assessment. The CDCs Case Definition of AIDS:
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Society's Choices: Social and Ethical Decision Making in Biomedicine Implications of the Proposed Revisions-Background Paper. OTA-BP-H-89 Washington, D.C.: U.S. Government Printing Office, August 1992 (listing a dozen other OTA reports on HIV disease). 55. U.S. Congress, Office of Technology Assessment, The Continuing Challenge of Tuberculosis, OTA-H-574 (Washington, D.C.: U.S. Government Printing Office, Sept. 1993). 56. U.S. General Accounting Office. Organ Transplants: Increased Effort Needed to Boost Supply and Ensure Equitable Distribution. GAO/HRD-93-56, Washington, D.C., April 1993. 57. U.S. General Accounting Office. Needle Exchange Programs: Research Suggests Promise as an AIDS Prevention Strategy. GAO/HRD-93-60, Washington, D.C.: March 1993. 58. U.S. General Accounting Office. Medicaid: States Turn to Managed Care to Improve Access and Control Costs. GAO/HRD-93-46, Washington, D.C.: March 1993. 59. Goston, L. The Americans with Disability Act and the U.S. Health care system, Health Affairs 1992; 11:248-257. 60. West, J. The social and policy context of the Act. Milbank Quarterly 1991; 69 (Supp. 1/ 2):3-24. 61. Gostin, L., Beyer, H., eds. Implementing the Americans with Disabilities Act: Rights and Responsibilities of All Americans. Baltimore: Brookes Publishing Co., 1993. 62. Gostin, L. Public health strategies for confronting AIDS: legislative and regulatory policy in the United States. JAMA 1989; 261:1621-1630. 63. Gostin, L. Genetic discrimination: the use of genetically based diagnostic tests by employers and insurers. American Journal of Law and Medicine 1991; 17:109-144. 64. See volume 136 of the Congressional Record, July 1990 for legislative history. 65. The ADA does not protect persons currently using illegal drugs (s.510) or a range of socially disapproved behaviors such as gender identity disorders, pedophilia, exhibitionism, compulsive gambling, kleptomania and pyromania (s.511). 66. Report of the Judiciary Committee, no. 101-485, part 3 (to accompany H.R. 2273 at 146-147. See Gostin, L., Public health powers: the imminence of radical change. Milbank Quarterly 1991; 69 (supp. 1/2):268-290. 67. Bayer, R. Public health policy and the AIDS epidemic. An end to HIV exceptionalism? New England Journal of Medicine 1991; 324:1500-1504. 68. But see the successful reform efforts in several states such as Hawaii and Maryland. General Accounting Office. Access to Health Care: States Respond to the Growing Crisis. Washington, D.C.: Government Printing Office; 1992. 69. Blendon, R. Bridging the gap between expert and public views on health care reform. JAMA 1993; 263:2573-2578. 70. Clinton, B. The Clinton health care plan. New England Journal of Medicine 1992; 327- 804. 71. Sullivan, L. The Bush Administration's health care plan. New England Journal of Medicine 1992; 327:801. 72. Bureau of National Affairs. Number of uninsured persons increases to 36.6 million in 1991. Daily Labor Report Jan. 12, 1993. 73. Wise, P.H., et al. Racial and socioeconomic disparities in childhood mortality in Boston. New England Journal of Medicine 1985; 313:360. 74. Pear, R. Big health gap tied to income is found in U.S. New York Times. July 8, 1993:A1, B10. 75. Council of Ethical and Judicial Affairs. Black-white disparities in health care. JAMA 1990; 263:2344. 76. Ayanian, J.Z., Epstein, A.M. Difference in the use of procedures between women and men hospitalized for coronary heart disease. New England Journal of Medicine 1991; 325:221. 77. Sultan, L. The Bush Administration's health care plan. Op cit. 78. Congressional Budget Office. Projections of National Health Expenditures. Washington, D.C.: U.S. Government Printing Office; 1992.
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Society's Choices: Social and Ethical Decision Making in Biomedicine 79. Rockefeller, IV, J.D. A call for action: the Pepper Commission's blueprint for health care reform. JAMA 1991; 265:2507. 80. See, e.g., National Institutes of Health Workshop on Breast-feeding Research, July 1993. 81. U.S. Department of Health and Human Services and U.S. Dept. of Energy. Understanding Our Genetic Inheritance: The U.S. Human Genome Project: The First Five Years (FY1991- 1995). Washington, D.C., 1990. 82. Equal Employment Opportunity Commission. Interim Enforcement Guidance on the Application of the ADA to Disability-Based Provisions of Employer-Provided Health Insurance. June 8, 1993. See Freudenheim, M. Insurers accused of discrimination in AIDS coverage: Disability law is cited. New York Times. June 1, 1993: Al, D2. 83. The White House. Implementing Recommendations of the Presidential Commission on Human Immunodeficiency Virus: The l0-Part Plan. August 2, 1988. 84. National Commission on Acquired Immunodeficiency Syndrome. Report Number One, at p. 2, 6, December 5, 1989. See Rudavsky, S., AIDS Panel Faults Bush Administration Leadership. Washington Post, June 25, 1992:A3. 85. Gastine, L. Preface to the Harvard Model AIDS Legislation Project: A decade of a maturing epidemic: an assessment and directions for future public policy. American Journal of Law and Medicine 1990; 16:1-32. 86. Megan v. HH Music Company, 946 F.2d 401 (5th Cir. 1991), cert. denied sub. nom., Greensburg v. H&H Music Company, 113 sect. 482 (1992). 87. Freudenheim, M. Patients cite bias in AIDS coverage by health plans. New York Times, June 1, 1993:A1. 88. Gastine, L. Foreword: Health care reform in the United States-The Presidential Task Force. American Journal of Law and Medicine 1993; XIX:1-20.
Representative terms from entire chapter: