PUBLIC POLICY AND BIOETHICS

There are at least two ways of understanding the relation of public policy to bioethics. The first, focusing on public policy in bioethics, involves the public laws (both statutory and case law), policies, regulations, and guidelines that bear on ethical aspects of medical practice and healthcare. These are public in the sense that they emanate from some publicly accountable governmental process, as opposed to private or professional policy; in addition, nonpublic institutions such as hospitals can adopt their own policies to conform to public policy. In this sense, legal requirements to obtain informed consent for treatment, federal regulations requiring approval of a research protocol by an institution's human subjects committee, and the lack in the United States of any governmental means of ensuring universal access to healthcare for all citizens represent public policy bearing on ethical aspects of medical and research practice.

When the relation of public policy to bioethics is understood in this way, the question arises as to the extent to which bioethics issues have been and should be matters of explicit public policy. Physician–patient relations, for example, may be taken to be a largely private matter to be worked out by physicians and patients outside of the public sphere, as they were to a great extent in the early part of the twentieth century, or to be a matter of professional concern by physicians in professional settings, but not the subject of and regulated by public policy. Alternatively, such issues might be seen, as they increasingly were in the United States in the 1970s and 1980s, as an appropriate concern of public policy. Thus, public policy in bioethics includes what governments choose not to do, as well as what they do, in bioethics.

The second understanding of the relation of public policy to bioethics focuses on public-policy bodies that have been influential in shaping bioethics, public policy on bioethics issues, and healthcare practice. Understood in this way, the subject is the manner and extent to which bodies in the United States, such as the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (hereafter President's Commission) or the National Bioethics Advisory Commission (NBAC), or international bodies, such as the United Nations Educational, Scientific and Cultural Organization (UNESCO) or the World Health Organization (WHO), have shaped bioethics and medicine. Why have the United States and many other countries frequently turned to such bodies in the development of public policy in bioethics? How have such bodies functioned? What has been their impact?

This entry addresses both of these understandings of the relation between public policy and bioethics. A general thesis of this entry is that bioethics and public policy have influenced one another. The field of bioethics has helped shape and has been shaped by both public policy in bioethics and a variety of public policymaking institutions in bioethics.

The Relation between Substantive Public Policy and Bioethics

As bioethics in the United States and elsewhere during the 1970s and 1980s became an area of great public and professional concern, many standard bioethical issues began to be addressed, not just in classrooms or between doctors and patients, but also in explicit public debates and policies. One of the most prominent examples, cardiopulmonary resuscitation (CPR), illustrates a relatively common pattern of this development of public policy on important bioethics issues. First, a new technology was developed; in this case and not atypically, it was a form of life-sustaining treatment. Originally the technology was developed for and applied in a relatively narrow range of cases in which there was clear expected benefit: saving otherwise healthy people who had suffered unexpected cardiac or respiratory arrest. CPR later came to be used in a wider range of cases, including many patients for whom its expected success and benefit were questionable. The reason for the wider use was that the conditions under which CPR was applied precluded taking time to make thoughtful decisions about whether to employ it once a patient was in need of it.

Reports of widely varied practices, including some that were ethically problematic at best and certainly did not represent sound general practice, led many hospitals to develop formal policies concerning resuscitation. In particular, the general interest in "do not resuscitate" (DNR) orders led to scholarly studies of the use of CPR and of DNR orders. Public bodies such as the President's Commission addressed the issue and developed recommendations about institutional policies, and the Joint Commission on Accreditation of Healthcare Institutions required institutions to have a policy regarding DNR orders. In this case, a public-policy response to an identified and significant ethical problem in medical practice led to both a public and a professional policy response.

In other cases, public-policy initiatives have sought to increase the use of a practice generally deemed desirable. For example, the U.S. Patient Self-Determination Act of 1991 was intended to increase the use and effectiveness of advance directives by requiring institutions receiving federal funds both to inform patients at admission of their rights under state law to use advance directives, and to have policies in place for implementing them.

Public policy regarding life-sustaining treatment and the care of the dying reflects as well as any issue the mutual interaction and development of bioethics scholarship and public policy. The Karen Ann Quinlan case first focused public attention in the United States on issues of life-sustaining treatment. In the landmark Quinlan ruling in 1976, the New Jersey Supreme Court held that an incompetent patient retained a right to refuse life-sustaining medical care, a right that could be exercised by a surrogate, in this case a parent, acting for the patient. The next fifteen years were filled with intense activity on these issues in both the public-policy and scholarly arenas of bioethics. In addition to books on the topic, many articles appeared in bioethics journals such as the Hastings Center Report and in medical journals such as the New England Journal of Medicine; at the same time, state courts around the country were addressing many legal cases concerned with life-sustaining treatment and the care of the dying. Other public-policy bodies issued extensive studies, such as the President's Commission's report Deciding to Forego Life-Sustaining Treatment (1983a), and briefer policy statements on the subject came from professional bodies such as the American Medical Association (AMA). The President's Commission's report drew explicitly on a wide range of bioethics scholarly work on life-sustaining treatment decisions, as well as on closely related legal scholarship and healthcare research. Court decisions frequently appealed not only to legal scholarship but also to the growing bioethics literature.

The bioethics literature on life-sustaining treatment issues was influenced by these court cases in two important ways. First, the attention many of these legal cases received served as a relatively direct stimulus for much bioethics commentary and analysis of the arguments made in the opinions. Because there was generally little specific statutory law constraining the judicial rulings, they often appealed in part to explicitly ethical arguments. Second, and at a deeper level, the President's Commission's report and many legal decisions greatly influenced debates on life-sustaining treatment and played a major role in the degree and nature of the consensus that emerged during the 1980s. This was true especially for specific issues such as the moral importance of differences between stopping and not starting life-sustaining treatment and between ordinary and extraordinary treatment, as well as on broader issues such as the nature and importance of the moral values of individual autonomy and well-being in guiding life-sustaining treatment decisions. The issue of forgoing life-sustaining nutrition and hydration is a particularly good illustration. Here, the debate in the bioethics literature began, not coincidentally, at about the same time that nutrition and hydration cases were being brought to a number of courts. Because the bioethics literature and the court decisions are best understood as profoundly interdependent parts of a single debate on which significant consensus was emerging, the bioethics literature and the court decisions were unlikely to veer in sharply conflicting directions on the permissibility of forgoing nutrition and hydration.

From its inception, bioethics has had a micro focus, especially on individual doctor–patient issues, and a macro focus on ethical issues in health policy, especially justice in healthcare. The micro issues were predominant in bioethics during the 1970s and much of the 1980s, and will, no doubt, continue to be important. But as health-policy debates in the United States focus on access to healthcare, containment of healthcare costs, and rationing of healthcare, the macro focus of bioethics is likely to become increasingly prominent. On these macroethical issues in health policy, the profound interaction of bioethics and public policy is even more evident. Unlike many doctor–patient issues, which could to a significant extent be worked out between individual doctors and patients, questions of justice in healthcare can be adequately addressed only at an institutional and policy level. Bioethics scholarship on these questions of justice that hopes to influence public policy and practice must address questions about the design of social, political, and professional institutions and practices. These are public-policy issues at their very core, which means that more profound mutual influences between bioethics and public policy can be expected in the future.

The Role of Public Policymaking Bodies in Bioethics: U.S. Commissions and Efforts

In the United States and throughout much of the rest of the world, public policy bodies have been established in bioethics to study and issue reports on bioethics issues. These public commissions have varied considerably in their nature, roles, and effectiveness.

THE NATIONAL COMMISSION. In 1974 the U.S. Congress established the U.S. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (hereafter National Commission). Two important factors led to the creation of this first public, national body to shape bioethics thinking and practice in the United States.

First, the character of biomedical research had changed significantly in the preceding three decades. Before World War II, such research was carried out largely in small-scale therapeutic settings in which researchers tended to be well known to and trusted by their patients/subjects and the surrounding community. During and following the war, however, the scale of this research expanded greatly as public expectations about the potential benefits of medical research grew. Biomedical researchers increasingly were distinct from clinicians caring for patients, and the unknown investigator replaced the well-known and trusted clinician.

Second, public concern with research abuses had increased. The shocking abuses of human subjects by Nazi doctors during World War II had earlier drawn public attention to these issues. In 1966 a member of the faculty of Harvard Medical School, Henry K. Beecher, published an article in the New England Journal of Medicine, detailing twenty-three instances of published research in which the treatment of human subjects was at best ethically problematic. Around the same time some especially egregious cases of research abuse received wide public attention, such as the Tuskegee Syphilis Study, in which African-American men infected with syphilis were left untreated in order to study the natural course of the disease.

The National Commission's work has shaped law, federal regulatory oversight, and institutional oversight of research practice. The National Commission consisted of eleven commissioners and a professional staff. The commission held public hearings, sponsored a wide range of studies and scholarly papers, and eventually issued reports on the use of different groups of human subjects—children, prisoners, the mentally infirm, and fetuses—in research. The legislation establishing the National Commission required the secretary of the U.S. Department of Health, Education, and Welfare (forerunner of the Department of Health and Human Services) to implement the National Commission's recommendations or offer a public justification for not doing so. In some cases, the commission's reports led to the virtual elimination of research with particular classes of subjects, such as prisoners, whereas in other cases, they led to the development of special rules for the involvement of particular classes of subjects, such as children. The final report of the National Commission—the Belmont Report (1978a)—had a great impact on bioethics because it addressed the moral principles that underlay the various reports on particular aspects of research. Here, the principles of respect for persons, beneficence, and justice were enunciated; these same principles later figured prominently in Tom L. Beauchamp and James F. Childress's Principles of Biomedical Ethics (first published in 1979), probably the most widely read and influential scholarly work in bioethics.

The National Commission stressed the moral principle of respect for persons and the implications of this principle: that subjects should be enrolled in research only with their free and informed consent and with their confidentiality properly protected. The work of the National Commission continues to form the ethical basis for the federal government's regulatory oversight of research involving the use of human subjects, carried out by the Office for Human Research Protections within the Department of Health and Human Services (HHS).

THE PRESIDENT'S COMMISSION. When the National Commission concluded its work in 1979, the Congress established the President's Commission with a substantially broader mandate. During the four years of its existence, this commission issued ten book-length reports on a wide variety of topics in bioethics, including the definition of death, the compensation of injured research subjects, genetic screening and counseling, genetic engineering, informed consent in medical treatment, decisions about life-sustaining treatment, access to healthcare, whistle-blowing in research, and protection of research subjects. Like the National Commission, the President's Commission had public commissioners and a full-time professional staff representing a wide variety of academic disciplines.

Because of the diverse nature of the topics addressed by the President's Commission, its reports had different kinds of impacts on bioethics. For example, Defining Death (1981) contributed to the adoption of a uniform brain-death standard for death by the great majority of the states; here, the impact was a relatively discrete piece of legislation. On the other hand, the report on informed consent, Making Health Care Decisions (1982), had a more diffuse, though no less important, impact in advancing the ideal that physicians and patients share decisions about treatment; here, medical education and the professional ethos for physician–patient relations were affected. Securing Access to Health Care (1983b) focused on the ethical problems represented by the more than 20 million Americans who were without health insurance. This report had relatively less immediate impact than many others because massive government expenditures were necessary to solve the problem at a time when the political ideology of the new presidential administration was to reduce, not expand, government social programs. Ten years after it was issued, however, it was clear that this report contributed to the public and political recognition in the United States of the ethical problem of access to healthcare and to understanding the ethical case for government action.

Deciding to Forego Life-Sustaining Treatment (1983a) was almost certainly the commission's most influential report, for several reasons. Following the Quinlan decision in 1976, both public and professional attention to this area steadily increased. In addition, new and more widely disseminated life-sustaining medical technology meant that both professionals and the public had had more personal experience with these difficult decisions; individual professionals, healthcare institutions, and the public were uncertain about what was ethically acceptable and desirable practice in this area. Finally, implementation of the commission's recommendations did not require major new government expenditures. The commission's recommendations centered on patients' or their surrogates' rights to weigh the benefits and burdens of any available treatment, including the alternative of no treatment, according to the patient's values, and to accept or refuse treatment. The report criticized and offered alternative language for some distinctions that until then had had an important influence on the bioethics literature and on practice, such as the differences between not starting and stopping a life-sustaining treatment and between ordinary and extraordinary treatment.

The report filled a vacuum: Hospitals, courts, and others sorely needed guidance about ethically acceptable practice. The fact that this report, like the others, was issued by a presidential commission gave its recommendations an unmatched authoritativeness.

NATIONAL BIOETHICS ADVISORY COMMISSION. After a lengthy hiatus in which the United States lacked any national bioethics commission, in 1996 President Bill Clinton established the National Bioethics Advisory Commission (NBAC). Its initial work plan was interrupted by the cloning of the sheep Dolly and the president's request for a report within ninety days on the ethical, social, and legal issues of cloning. This illustrates one role that public commissions sometimes play: responding in a rapid, but measured and reasoned, way to developments in biotechnology that raise serious ethical concerns. The commission recommended that there be a moratorium on any reproductive cloning, largely based on concerns about safety, to allow time for a public debate and a later revisiting of the issue.

A later report of NBAC addressed a different but related issue—embryonic stem cell research. This was another instance of using a public commission to address an extremely controversial issue in the hopes of achieving a more reasoned debate of the issues and a position that might gain some consensus among parties with widely differing views. One focus of the NBAC report was whether federal funding of this research should be permitted. The commission sought a compromise position by making a distinction in the sources of the stem cells and recommended permitting that funding when the cells were derived from cadaveric tissue or from embryos left over from in vitro fertilization (IVF), but rejected funding of research using cells derived from embryos created for the purposes of research by IVF or by means of somatic cell nuclear transfer. While some found the compromise position appealing, it failed to create any consensus that could guide public policy, in particular on public funding of this research. It was another illustration, along with an earlier fetal tissue study and a failed attempt to establish a national bioethics commission in the late 1980s that foundered on disputes about abortion, of the difficulty of using public commissions to address deeply controversial issues, especially in the United States those that involve the moral status of embryos and fetuses.

As had the earlier U.S. public commissions, NBAC also produced several reports on ethical issues in research, including research with mentally impaired subjects, research in developing countries, and a study of the overall regulatory process of research. This work reflected continuing concern with protecting human subjects in research as well as new concerns such as the potential for exploitation of subjects in the increasingly common research being done in developing countries by investigators from the developed world.

PRESIDENT'S COUNCIL ON BIOETHICS. The charter of NBAC expired in October 2001, and in November 2001 President George W. Bush appointed the President's Council on Bioethics. Through early 2003, the council had produced only one report, Human Cloning and Human Dignity: An Ethical Inquiry (2002), which featured special attention to the stem cell research debate. Interestingly, in the case of therapeutic cloning and stem cell research, the council was charged to advise the president on an issue on which he had already taken a formal position, which illustrates the political tensions that these public bodies can sometimes face. There was also considerable controversy about whether the membership of the council was overly slanted in a particular political and ideological direction.

OTHER PUBLIC OR QUASI-PUBLIC BODIES. In the United States, besides the national bioethics commissions, a number of other public or quasi-public bodies have also have entered these frays. Several states, including New Jersey and New York, established bioethics commissions. In addition, many government bodies and commissions with a broader medical or health policy agenda have had one or more bioethicists among their members and have included bioethics issues as a part of their broader concerns. For example, the Task Force on Organ Transplantation of the HHS addressed ethical issues in the procurement and distribution of scarce organs for transplantation, although the ethical issues were not the main focus of its work. The Institute of Medicine within the National Academy of Sciences has done many studies on and issued reports concerning a wide array of bioethics issues as well as broader health and public policy issues that have bioethical components. Furthermore, many other government organizations and studies whose main focus is not ethical issues typically now include some discussion of the ethical aspects of their work.

A striking example of the extent to which bioethics in the United States has become an accepted part of the public realm is the Human Genome Project. This $15 billion, fifteen-year project to map and sequence the complete human genome or genetic code gave the ethical implications of government-sponsored research an unprecedented role. At the time the project was being debated in Congress, there was considerable concern about its ethical, social, and legal ramifications. James Watson, the first director of the National Center for Human Genome Research (now known as the National Human Genome Research Institute) at the National Institutes of Health, committed the center to spending at least 3 percent of its total budget on research into and public and professional education concerning these legal and bioethical issues, and in fact it has ended up spending more. The genome project's Ethical, Legal and Social Implications (ELSI) Research Program has supported a wide range of studies and projects aimed at the general public as well as the academic, research, and public-policy communities.

A last important manifestation of public-policy bodies in bioethics in the United States has been the formation of grassroots citizen groups in a number of states to address bioethics issues. Such groups have often treated issues of health policy, especially how to set priorities among healthcare services with a view to allocating limited funds in government health insurance programs, such as Medicaid. The widely publicized prioritization of healthcare services in the state Medicaid program in Oregon made use of such citizen groups.

International Activity

The United States is hardly alone in turning to government bodies to address issues of bioethics. Indeed, while the United States had no national government bioethics commissions between 1983 and 1996, countries throughout the world established them during and after this period. Nearly every country in northern and western Europe, as well as a number of eastern European countries, now has a national bioethics commission. Such commissions also exist in a number of countries in the Americas and in Asia and Oceania.

These national bioethics commissions have varied greatly—in their form and membership, in the scope of issues addressed, and in their general effectiveness. For example, the Danish Council of Ethics, established by the Danish Parliament in 1988, has followed a populist model, with largely lay members, and has pursued broad educational efforts. In France, the National Consultative Ethics Committee for Health and Life Sciences has followed a more elite model with scholarly and professional members, high public and professional prestige, and more direct attempts to determine government policy. In Great Britain, governmentsponsored groups have addressed ethical policy issues in reports comparable in scope and detail with those of the U.S. commissions. The Nuffield Council on Bioethics in Great Britain has established expert panels that have produced major reports of high quality on a wide range of subjects including genetic screening, use of human tissue, mental disorders and genetics, genetically modified crops, stem cell therapy, research in developing countries, patenting DNA, and behavior genetics.

Although there is no international bioethics commission as such, both the United Nations (U.N.), through two of its agencies, and the Council of Europe have created bodies that have been active in bioethics. UNESCO has an International Bioethics Committee that has addressed many bioethics issues and that developed the Universal Declaration on the Human Genome and Human Rights (1997), following up the earlier general U.N. Universal Declaration of Human Rights. The World Health Organization has been active on such issues as resource allocation and genetics, with special emphasis on developing countries. In 1982 the International Association of Bioethics was formed to foster international interchange among scholars and practitioners in bioethics. Most non-U.S. efforts, however, have been at a national level so that they can reflect a particular society's historical, political, legal, and cultural traditions.

Membership and Authority Issues

The use of governmental bodies to address public policy in bioethics raises political and ethical questions of membership, function, decision-making methods, and the authority of their recommendations. With regard to membership, there has often been an attempt to balance two concerns: first, that members have relevant expertise on the issues the body will address and that the body be representative of the relevant professions and disciplines; second, that members represent their communities in such areas as gender, minority status, and political affiliation. Statutes establishing these bodies often mandate the areas from which members must be drawn.

The membership question is related to the proper function of these bodies and the authority of their recommendations. If these bodies were to provide only the highest-level expertise on the issues of concern, the case for representativeness would be weak, though even then the question of who had expertise in bioethics, and the nature of their expertise, would be more contentious than in most areas of scientific medicine. That has not generally been their sole function, however. They have been viewed as combining such expertise with the role of addressing what public policy should be in a particular area. This latter role is by its very nature a more political role, requiring representation of groups that have a substantial stake or interest in the policy question at issue, both on ethical grounds and because the group's recommendations must be able to be "sold" in the political arena.

The difficulty of using governmental bodies to address deeply divisive ethical and political issues is illustrated in the United States by the task force established to address the use of fetal tissue in research. Its recommendations to permit limited use of fetal tissue essentially were ignored in the late 1980s by the first Bush administration because the use of fetal tissue was so closely related to the politically contentious issue of abortion. "Right to life" groups feared any use of fetal tissue could increase or appear to condone abortions. The attempt by the U.S. Congress in the late 1980s to establish a biomedical ethics advisory committee to its Biomedical Ethics Board also failed in large part because of political struggles over abortion.

Representativeness in membership is desirable to ensure that concerns and points of view of significant groups are taken account of for pragmatic reasons, so those groups will support instead of block acceptance and implementation of the recommendations, and for ethical reasons, so those most affected by the recommended policies have some input into what the policies will be. At the same time, powerful professional groups, such as physicians, as well as corporate interests, such as pharmaceutical firms, often have a substantial stake in the policy outcomes. When those interest groups have important or dominant roles within bioethics commissions, they can shape and control the debates, the policy alternatives considered, and the recommendations that emerge. Thus, in the membership of public-policy bioethics bodies, as well as in the policy process more broadly, representation for affected groups must be balanced with preventing powerful professional groups from controlling and distorting the policy process.

For several reasons, the authority of the recommendations of these public-policy bioethics bodies is more problematic than those of analogous scientific bodies. First, the nature and even the existence of expertise in ethics generally, and bioethics in particular, is contested to a greater extent than in scientific medicine. Many people believe that ethical claims express attitudes or feelings and cannot be shown in principle, much less in practice, to be true or false in the manner that claims about empirical matters of fact can be. By contrast, a consensus conference on the appropriate treatment of pulmonary hypertension or breast cancer may be controversial and involve ethical or value issues, but it is usually thought that expertise in the medical aspects of these treatment issues is not problematic to the extent that bioethics expertise is.

Second, appeals to authority are widely acknowledged to be out of place in ethical reasoning—it is the strength of the arguments, not who makes them, that should be persuasive. Because public bodies such as the President's Commission or NBAC typically lack any enforcement powers for their recommendations, their impact ultimately should, and does, lie in their ability to persuade others who do have the authority to pass legislation, render court decisions, and make institutional policies, of the wisdom of their recommendations. This has led many such bodies to see their task as articulating and advancing an emerging consensus on the issues addressed. The President's Commission put great efforts into reaching consensus and had only one dissent, from a single commissioner, in all of its reports. Moreover, all such bodies will give some weight to arriving at consensus, and as in the more overtly political process, reaching consensus sometimes requires that ethically problematic but politically necessary compromises be made, especially regarding policy recommendations.

Some would argue that the main purpose of such bodies is to sharply delineate the ethical issues, conflicts, and choices. The President's Council for Bioethics, for example, sees its role as providing a deep exploration and delineation of the issues, but not blurring or sidestepping them in the interests of compromise and consensus. Pragmatic or political compromise, according to this view, should be left to the overtly political process. In this way the ethics body can speak more unequivocally to the ethical issues and not compromise or cut and trim the ethical arguments where it is politically expedient to do so. On the other hand, this approach may make the body less effective than it might otherwise be in influencing policy.

Another issue that has received some attention concerning these public bodies is the methodology they do or should employ in their deliberations and in arriving at policy positions. In their 1988 book, The Abuse of Casuistry, Albert R. Jonsen and Stephen E. Toulmin argued that when members of the National Commission addressed concrete cases, they were generally able to arrive at consensus, even when they disagreed strongly on the more general moral principles or theories that underlay their consensus. Jonsen and Toulmin contrasted the experience of the National Commission with what is sometimes called principlism, in which bioethics, and applied or practical ethics more generally, are seen as beginning with moral principles or theories that are applied in a relatively mechanical, deductive fashion to particular cases or policy choices.

Because providing justification for concrete moral judgments involves appeal to moral principles or reasons of often substantial generality, public-policy bodies such as bioethics commissions should, and in fact often do, work back and forth between concrete cases and more general moral principles. The aim should be to develop a position on the particular ethical and policy issue that is backed by the most plausible, coherent reasons. This can often be a great challenge when political pressures to reach a publicly acceptable compromise conflict with the policy backed by the best ethical reasons.

Conclusion

Bioethics issues have come to receive prominent attention in public policy, and bioethics scholarship has strongly influenced public policy in healthcare. At the same time, public policy in the form of legal decisions and public-policy bodies deeply influenced the development of both the field and scholarship of bioethics during the last decades of the twentieth century. As bioethics comes to focus more on broader issues of health policy in coming years, this mutual interaction and influence between public policy and bioethics can only be expected to increase.

dan w. brock (1995)

revised by author

SEE ALSO: Communitarianism and Bioethics; Consensus, Role and Authority of; Death, Definition and Determination of; Embryo and Fetus, Embryonic Stem Cell Research; Environmental Policy and Law; Ethics, Social and Political Theories; Fertility Control, Legal and Regulatory Issues; Health Policy in International Perspective; Health Policy in the United States; Informed Consent; Injury and Injury Control; Law and Bioethics; Law and Morality; Maternal-Fetal Relationship: Legal and Regulatory Issues; Medical Ethics, History of the Americas: United States in the Twentieth Century; Organ and Tissue Procurement; Patients' Rights; Privacy in Healthcare; Public Health Law; Research Policy; Social Medicine

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INTERNET RESOURCES

Nuffield Council on Bioethics. 2003. Available from <http://www.nuffieldbioethics.org>.

United Nations Educational, Scientific and Cultural Organization. 1997. "The Universal Declaration on the Human Genome and Human Rights." Available from <http://www.unesco.org/ibc/index.html>.