Since antiquity, people have sought to establish ways of living together and minimizing conflict among themselves in order that they might prosper. From this most practical undertaking, a vigorous debate has arisen about what is “right” and what is “wrong.” Indeed, much of the history of humankind is the history of the tensions that have arisen among groups differing in their cultural values, their morality, and their ethics.
Values express what people believe to be valuable about the way they live, both as individuals, and as members of a community. Consequently, values serve as the basis for morality. Morality follows valuing in that it translates personal beliefs into societal norms of conduct. For instance, consider the issue of abortion. It is fair to say that most people value human life. It is also fair to say that most people, certainly in the developed world, value autonomy—the right of individuals to make personal decisions about their own well-being. The central tension in the abortion debate is the disagreement between the pro-life and pro-choice sides as to which of these two values is more important. Each side holds a different moral position because they have made different judgments about the relative value of “respect for autonomy” on the one hand, and “right to life” on the other hand.
Ethics is the branch of philosophy that deals with morality and the distinctions between right and wrong. Ethics makes a study of the tensions that arise among people’s values, and it attempts, through applied logic, to set out rules of conduct for each particular class of human action. Because it has its basis in logic rather than in, say, religion, ethics is usually considered more objective than morality. Both ethics and morality, however, attempt to tell people what they ought to do.
Law, like ethics, has its basis in morality, but differs in that it does not merely tell people what they ought to do, but rather what they are allowed to do, usually under threat of penalty. Laws generally reflect the values and morals of society, but they are not synonymous with values and morals. Abortion may be legal, but many people find it immoral because they believe that human life is more important than personal autonomy. Physician-assisted suicide may be illegal, but many people believe that it is ethical because, in addition to preserving life, medicine also has an obligation to relieve suffering, preserve dignity, and allow people to have autonomy over their own life and death.
When parents raise children, they instill a sense of what is socially acceptable, making distinctions between what is “right” and what is “wrong.” However, the individual’s responses become instinctual, and there is rarely any basis for arguing in a rational way one’s personal view of what is right or wrong. Because humans need to provide a rational basis for their decisions, the subject of “ethics” is one that is gaining more attention in training programs for children, adults, and professionals. In public health, every decision concerning research and every action taken has ethical implications.
Public Health Ethics
Like ethics, public health has been a concern of human societies since antiquity. Plagues of contagious diseases have decimated populations since civilization began, and their significance has always been recognized. Because of the life-and-death importance of disease and the skill and training required to treat it, societies have always recognized the importance of physicians and have accorded them substantial jurisdiction over life and death. With this jurisdiction comes much power and, more importantly, much responsibility. This power and responsibility resulted in the first code of professional ethics, the Hippocratic Oath, which set out rules of conduct for physicians in their dealings with patients. Medical ethics, however, has evolved far beyond its roots and encompasses not only doctor-patient ethics, but also biomedical research ethics, the more socially based health ethics, and public health ethics.
Public health must balance the public good with the good of individuals. This perspective sometimes leads to conflict. For example, one of the most respected ethical traditions is doctor-patient confidentiality. However, in the case of a public health threat, such as a communicable disease, a tension naturally arises between the ethical responsibility to maintain confidentiality and the responsibility to protect the public health.
Human interactions have the potential to result in ethical tensions. These tensions reflect a particular, unique context. In each context, opposing sides differ in that they subscribe to a particular set of values. Each side may be equally committed to, and able to defend, its moral judgment. How, then, are ethical tensions to be resolved when each situation is unique? The great volume of academic study in ethics over thousands of years has produced numerous approaches to ethical analysis. Fortunately, however, ethics has been studied well enough that some common threads have been recognized.
The dominant approach in public health has been to apply the utilitarian theory of ethics to resolving issues relating to public health. This theory focuses on achieving the greatest good for the greatest number of people and, thus, tends to focus on protecting the population rather than the rights of individuals (e.g., laws requiring the reporting of communicable diseases and the mandating of vaccination programs). Causing more good than harm is what drives public health decision making. However, in addition to this approach, other approaches are now commonly used. For example, duty-based ethical theory (deontology) and the four principles of bioethics as articulated by Tom L. Beauchamp and James R. Childress (1994) are helpful for both illustrating ethical tensions and serving as a basis for decision making. The four principles are:
- Respect for autonomy. This is the principle of allowing people to make decisions about themselves for themselves. It is about respecting human dignity, believing in a person’s ability to make good decisions, and is the opposite of paternalism.
- Nonmaleficence. This means that actions should not harm others. It is derived from the Hippocratic injunction to “first, do no harm.”
- Beneficence. This is the mirror image of nonmaleficence, meaning that actions are taken in order to maximize benefits to individuals and society. It is the principle of doing good.
- Justice. This refers to distributive justice and is the principle requiring that benefits and harms should be equally distributed among people. Related ideas are fairness, equity, and impartiality.
These principles provide a useful framework for informing actions, interventions, policies, and research in public health and its related disciplines. By themselves, however, they do not usually provide clear answers to ethical dilemmas. Instead, they are used as a framework for understanding the problem at hand. For example, should physicians be required to inform patients and gain their consent to test for HIV (human immunodeficiency virus) antibody status in a hospital? On the one hand, patients who suspect that they might be HIV-positive may refuse to allow themselves to be tested, potentially aggravating an already disastrous public health problem and perhaps exposing hospital personnel to HIV. In this case, the principle of beneficence would seem to obligate the state to insist on HIV testing regardless of patient consent. On the other hand, the principle of respect for autonomy would dictate that patients have a right to make their own decisions. Thus, there is a tension between the principles of beneficence and respect for autonomy. This is not unusual in the principle-based approach.
Tensions are resolved by taking the overall context of the issue of concern into consideration. Above all, an ethical analysis is not conducted against a checklist. Rather, it is a thoughtful appraisal of all related concerns, paying due cognizance to the broader social context that gave rise to the tension in the first place. A major contextual distinction is made between public health research and public health practice. For example, in research, studies of the broader determinants of health, such as socioeconomic factors, are of benefit. However, while the linking of income tax records with health records could provide a rich source of data, such research is prohibited. On the practical side, in communicable disease investigations, the utilitarian approach dominates. In sum, for research, individual privacy takes precedence over utility; in public health practice, utility takes precedence in that beneficence dominates over privacy.
More often than not, the four principles illustrate the tensions that exist and the issues that are involved rather than providing easy solutions to complex ethical questions. This is as it should be. Human interactions are complex and dynamic, requiring equally complex judgments in order to succeed. People are not machines whose actions are prescribed by a rigid set of rules. Learning how to do ethical analysis can be helpful in making an ethical decision.
A complementary approach to principle-based bioethics is the case-study approach, also called casuistry. In this approach, typical cases of ethical dilemmas and their results are recorded in an attempt to provide precedents to guide future decision making. It is analogous to the way that most modern democracies structure their legal systems. By analogy, one might think of written legislation as similar to the principle-based bioethics approach. As everyone knows, however, the law as it is written cannot address every individual situation. To resolve individual cases, there are courts that interpret legislation and set precedents through their judgments. This body of precedents forms the case law and assists judges in deciding future cases. Similarly, in bioethics, the principles of respect for autonomy, beneficence, nonmaleficence, and distributive justice are complemented by a body of case studies that help professionals understand how the principle-based approach can be applied. The American Public Health Association published a collection of case studies in Case Studies in Public Health Ethics (1997), in an attempt to document normative ethical practices.
The Role of Ethics Guidelines and Professional Self-Regulation
Although there is much agreement on the basic principles of ethical public health research and practice, further specification of the principles is required to help deal with real-world dilemmas. Therefore, codes of conduct or guidelines to ethical behavior are established among groups of professionals. The first such code in public health was the penal code for physicians of 1520 compiled by the Royal College of Physicians of London. The recommendations of the World Medical Association Declaration of Helsinki (1975) are used worldwide as a guide for the treatment of human subjects in biomedical research. An example of guidelines with a practical focus is the 1991 Ethical Guidelines for Epidemiologists. These guidelines have been organized as a set of obligations or duties and are reflective of the ethics of public health research. They are:
- Obligations to the subjects of research:
- to protect their welfare
- to obtain their informed consent
- to protect their privacy
- to maintain confidential information
- Obligations to society:
- to avoid conflicts of interests
- to avoid partiality
- to widen the scope of epidemiology
- to pursue responsibilities with due diligence
- to maintain public confidence
- Obligations to funders and employers:
- to specify obligations
- to protect privileged information
- Obligations to colleagues:
- to report methods and results
- to confront unacceptable behavior and conditions
- to communicate ethical requirements
Colin L. Soskolne, in a 1989 article in the American Journal of Epidemiology, made an analogy to the legal system, comparing legislative control over public behavior to self-regulation among the professions. In this analogy, legal enforcement by the police and courts is analogous to the professional practices of peer review, subscribing to ethics guidelines, and awarding and removing the license to practice by professional associations.
Medically qualified public health practitioners, such as nurses and physicians, generally have their own professional associations that guide granting (or removing) the license to practice, based on codes of conduct. Public health scientists, researchers, and advocates, on the other hand, are not usually licensed, but abide by the voluntary ethics guidelines promulgated by their respective professional societies (e.g., the American College of Epidemiology). The intention of these voluntary guidelines is to enable an individual’s judgments to be informed by the shared values and experiences of his or her colleagues. Thus, they provide guidance rather than regulation.
It should not be inferred from this lack of licensure that unethical practice is rampant. Rather, like science in general, public health science is governed by peer review and peer pressure. Unethical conduct, when it is discovered, can be met with a denial of public funding, the inability to participate in the scientific community through the publication of research, and collegial sanction.
Major Ethical Tensions in Public Health
Because social values and technological advances change over time, new ethical challenges emerge whenever new technologies or circumstances arise with consequences for public health. The following are some of the major issues confronting public health ethics at the start of the twenty-first century.
Individual and Community Rights
Perhaps the clearest example of an ethical tension in public health is the balancing of individual and community rights when a person is discovered to have a communicable disease. A necessary part of the control of communicable disease is the control of individual behavior. Indeed, some the strongest legislation in the Western world is public health legislation that permits the state to constrain and even to incarcerate a person indefinitely for being sick. Typical public health legislation is the Illinois Department of Public Health Act (20ILC523051), which states that the department has “supreme authority in matters of quarantine” and “may order a person to be quarantined . . . until such time as the condition can be corrected” (Section 2A). Analogous legislation exists in Canada. This represents one extreme of protecting the populace by restricting individual freedoms. To put this in context, however, that strategy has been employed seldom in the history of the United States. One famous case was that of Typhoid Mary (Mary Mellon), who was quarantined for life after infecting dozens, if not hundreds, of people in the New York area with typhoid fever in the early 1900s. There have also been a few cases in which a person who was HIV-positive knowingly had unprotected intercourse and quarantine laws were applied.
The identification, reporting, and sometimes isolation of victims of communicable disease are generally accepted practices. Historically, when diseases such as leprosy, typhoid, plague, cholera, smallpox, or polio menaced populations, draconian control measures were deemed mandatory. In the past, lepers were routinely isolated in leper colonies, typhoid carriers were banned from certain occupations, and French towns known to have cholera victims were blockaded—and such actions in the past are not viewed today as having been unreasonable. The alternative would have been doing nothing to stop the continued spread of the disease and the decimation of populations. That is not to say that such treatment would be considered ethical in the twenty-first century, because there are professionals who can treat these conditions and there is widespread education to prevent panic about the unknown.
The HIV/AIDS (human immunodeficiency virus/acquired immunodeficiency syndrome) pandemic presents an example of a modern plague and the response of the modern world to an incurable, widespread communicable disease. When HIV/AIDS was first discovered in homosexual men, one element of society sought to label them as deviants deserving of their condition. It was suggested that those infected with HIV be quarantined. This reaction sometimes resembled the witch-hunts of the Middle Ages, with victims driven from their jobs and children rejected by schools. Indeed, Cuba adopted this as policy at the outset. Fortunately, however, in most other countries, advances in knowledge of how the virus is and is not transmitted, coupled with widespread education and advocacy in Western countries, have reduced the negative reaction to sufferers of HIV/AIDS and helped in curbing the spread of the epidemic. In fact, the impact of that initial public reaction has had the effect of strengthening individual rights.
In Western countries, a test for HIV requires the prior informed consent of the patient. The privacy of HIV-positive patients and the confidentiality of their records is respected and counseling is given to patients, their families, and their sexual contacts. Also, because the risk of occupational HIV-transmission is relatively low, health care workers are not permitted to discriminate against HIV-positive patients. Surveillance activities are usually carried out using anonymous, unlinked data in order to minimize the possibility of a person’s HIV status being made public. Overall, the treatment of people with communicable diseases has become the benchmark for ethical practice within the public health community.
The new millennium brought with it the sequencing of the human genome. Genetic testing has consequences not only for the individual tested, but also for his or her family. Consequences include issues of confidentiality, insurability, employability, stigmatization, and the loss of hope that arises from the knowledge that some increased but uncertain risk exists for future illness or early death. Test results have implications for both living and unborn children, as well as relatives owing to a sense that a poor health outcome is genetically predetermined. These concerns are especially troubling because genetic testing is a new technology that has not yet been fully evaluated for clinical predictiveness. Genetic tests have great benefit in family planning where a family history of genetic defects is established.
Weighing Benefits, Harms, Risks, and Costs
All public health interventions require a balancing of benefits versus harms and costs. Vaccination campaigns always have an associated risk of harm because of adverse reactions to the vaccine. This potential for harm is known, but is usually very small in comparison to the benefit to the population. The clear ethical duty of public health officials who conduct vaccination campaigns is to inform each person (or his or her guardian in the case of children) of the risks and benefits of the vaccination. It is questionable whether this can be called informed consent in some cases, because vaccinations are often mandatory by law. Those experiencing adverse reactions deserve compensation.
Another example of weighing benefits and costs comes from environmental health. It is well known that pollution from automobiles and industry can cause potentially life-threatening air-quality conditions. However, the population of adversely effected persons is relatively small in comparison to the cost of, say, banning internal combustion engines. Therefore, some chemical and air pollution are allowed to continue.
In the modern era of trade liberalization, it may become even more difficult to control environmental health hazards. In the mid-1990s, California moved to ban a gasoline additive called methyl tertiary butyl ether (MBTE), a possible human carcinogen and environmental toxin, because it is very water soluble and could severely contaminate groundwater supplies. The cost of a future clean-up of such a contamination would be enormous. However, under the North American Free Trade Agreement (NAFTA), a government that limits a company’s ability to sell a product can be held liable for the corporation’s lost profits. Methanex, the corporation that makes MBTE, is suing the State of California under these NAFTA regulations. At the time of this writing, the case has not yet been resolved. However, in 1998, Ethyl Corporation successfully challenged the Canadian government under NAFTA following a similar Canadian ban on another gasoline additive. It will be interesting to see how efforts by states to protect public health will fare under the growing trend toward trade liberalization and corporate rights. It would seem that the principles of distributive justice, beneficence, and nonmaleficence would all favor allowing states to protect citizens against the harmful effects of pollution, even at the expense of corporate profits.
Conflicting Interests: A Special Problem in Occupational Health
Many public health workers are employed by governments, and many public health researchers are engaged by academic institutions. The ability of such public health practitioners to remain impartial and free of conflicting interests is relatively secure. However, occupational health specialists employed or contracted by corporations sometimes find themselves in a more tenuous position. While their primary goal is to safeguard the health of workers, their pay and continued employment are dependent on the company they work for. External pressure can come from government regulatory agencies and the media. There are several cases of occupational epidemiologists who were ordered by their company to withhold information that might have been beneficial to workers. Sometimes a company may even take punitive legal measures with the intention of effectively gagging a whistleblower.
In recognition of the sometimes difficult position of industrial health workers, the International Commission on Occupational Health (ICOH) compiled, in 1991, the International Code of Ethics for Occupational Health Professionals, intended to give them professional recourse in a situation involving conflicting interests. This code emphasizes the primary obligation of the occupational health worker to protect workers’ health and safety, and encourages them to request that an ethics clause be written into their contracts of employment to help ensure professional independence.
Privacy, Confidentiality, and Informed Consent
Privacy of health data, and other sorts of data, is a major social concern. In the past, medical records were kept in paper files. The security of medical records has probably never been particularly good, but at least it would be difficult for large amounts of information to be pilfered from paper files. Today, the records of millions of people can be kept in a single computer file that is easily transmittable by electronic mail. Thus, the potential for commercial abuse of these records, especially in the upcoming era of genetic testing, is of concern.
In response to these concerns, governments around the world are implementing policies to protect people’s personal data. While these policies are generally welcome and necessary, they sometimes endanger potentially valuable public health research. A 1995 Directive of the European Parliament and the Council of Europe nearly made it impossible to conduct public health research involving the linkage of records from different data systems based on personal identifiers. Fortunately, the epidemiology community was able to intervene by requesting an exemption for legitimate public health research. Events such as this make it clear that while personal privacy is important, the good of the community sometimes requires that individuals make reasonable concessions on their privacy. By the same token, researchers must respect the confidentiality of research records.
Maintaining privacy and confidentiality is integral to informed consent. All informed consent in public health must include a statement about the intended uses of the data collected. In Canada, Supreme Court decisions have caused the previous “professional disclosure” standard to evolve into a “full disclosure” standard. Rather than the physician being the arbiter of what the patient needs to know, it is now required that physicians and researchers disclose all potential harms of treatment or research to patients. It follows that public health professionals should avoid any possibility of doing harm to individuals and vigorously protect their personal data.
Impartiality, Advocacy, and Research Integrity
Another debate that sometimes rages in the public health community, especially in epidemiology, is the potential conflict between being an impartial scientist and a public health advocate. Sometimes, a researcher may have very strong feelings about a particular issue and, in the interest of protecting the public health, may make recommendations that are not scientifically objective. On the other hand, the purpose of public health is to protect, and epidemiologists have an ethical duty to act on their findings.
The Toronto Resolution (1991), a “code of ethics in science and scholarship,” says that all scientific and scholarly codes of ethics should articulate some concern for social issues beyond their own subspecialty areas. For example, ethical codes should require adherents to oppose prejudice, anticipate the consequences of their research, protect ecosystems, and promote universal disarmament. Indeed, these are laudable goals and they highlight the advocacy role of researchers.
Most public health researchers would choose the middle road between scientific impartiality and vigorous advocacy, recognizing that both serve the needs of public health. Scientific impartiality, mixed with respect for the welfare and the rights of research subjects, should take precedence until a reasonable body of supportive scientific information is established. After that, the researcher may take on the role of passionate advocate with good scientific justification.
Public Health and the State: Beneficence or Paternalism?
The formation and enforcement of public health policy is a government function. Many public health interventions, such as water fluoridation and mass vaccination programs certainly have benefits, but respect for autonomy may be undermined. When the state does something to protect people, some may hold different values and feel that the state is acting paternalistically toward them.
Health promotion and health education provide people with knowledge and control over their own health, rather than their being passive recipients of medical care. Possible negative consequences of health promotion and education campaigns include the alienation of people holding different values, an increase in the health gap between socioeconomic groups, and the stigmatization of people who engage in perceived antisocial behaviors (e.g., tobacco use). Each person in society pays for the government’s advertising campaigns and health education programs through his or her taxes, regardless of whether he or she supports the campaigns.
An increasingly important public health issue is population control and the type of policies implemented to slow population growth. Family planning programs in China, and to a lesser degree in India and Singapore, have included such measures as forced sterilization, abortion, and tax penalties. Most Westerners would consider such methods abhorrent. In contrast, Western countries use resource allocation as the approach to control population growth. Resource allocation is used as a policy strategy to create, usually financially or legally, incentives or disincentives for achieving social goals. In Western countries, autonomy is respected in that people are allowed to make their own decisions about family size. However, because funds for family planning clinics and abortion centers are often collected through taxation, even those people against such practices contribute to their operation.
Public health aims to do good for as many people as possible and has largely succeeded in that goal. Most of the plagues of the past have been eliminated in the developed world. When contagious diseases were the main killers, the tension between individual and community rights was fairly easily resolved. In the twenty-first century, however, injuries, heart disease, cancer, and stroke are the main health threats in the developed world. These require a different public health response—one in which there will be many conflicts between individual autonomy and the right of the community to prohibit potentially dangerous behaviors.
Public health is entering a new age of challenges. What should be done about increasing population growth? How can society deal with the ethical conflicts of euthanasia and abortion? How do technological advances arising from the sequencing of the human genome impact on individual rights? How strongly can governments forbid behaviors like smoking, riding motorcycles, or even bicycles, without a helmet; or eating fatty foods? How much emphasis should be put on economic growth versus environmental degradation? How can the disparities between rich and poor be reduced? These are all difficult ethical questions because they strike at the heart of passionately held values, beliefs, and ideals. All public health research, practice, resource allocation, and the like should be based on ethical decision making. To help address these challenges, educating people about the approaches to ethical analysis should be a priority.
- American College of Physicians, Ad Hoc Committee on Medical Ethics (1984). “American College of Physicians Ethics Manual.” (Position paper). Annual International Medicine 101:129–137.
- Beauchamp, T. L., and Childress, J. F. (1994). Principles of Biomedical Ethics. New York: Oxford University Press.
- Beauchamp, T. L.; Cook, R. R.; Fayerweather, W. E.; Raabe, G. K.; Thar, W. E.; Cowles, S. R.; and Spivey, G. H. (1991). “Ethical Guidelines for Epidemiologists.” Journal of Clinical Epidemiology 44(Supp. 1):151S– 169S.
- Bell, D. M. (1997). “Occupational Risk of Human Immunodeficiency Virus Infection in Healthcare Workers: An Overview.” American Journal of Medicine 102(suppl 5B):9–15.
- Benenson, A. S. (1995). The Control of Communicable Diseases Manual. Washington, DC: American Public Health Association.
- Coughlin, S. S., and Beauchamp, T. L. (1992). “Ethics, Scientific Validity, and the Design of Epidemiologic Studies.” Epidemiology 3:343–347.
- Coughlin, S. S.; Soskolne, C. L.; and Goodman, K. W. (1997). Case Studies in Public Health Ethics. Washington, DC: American Public Health Association.
- Directive of the European Parliament and the Council of Europe (1995). On the Protection of Individuals with Regard to the Processing of Personal Data and on the Free Movement of Such Data. Brussels: Council of Europe.
- International Commission on Occupational Health (1996). International Code of Ethics for Occupational Health Professionals. Singapore: Author.
- Johnson, B. J., and Soskolne, C. L. (1986). “AIDS: Medicolegal Considerations for Canadian Hospitals.” CMAJ 135:091–1096.
- Keller, A.; Froines, J.; Koshland, C.; Reuter, J.; Suffet, I.; and Last, J. (1998). Health & Environmental Assessment of MTBE: Report to the Governor and Legislature of the State of California, Volume I: Summary & Recommendations. Sacramento, CA: Governor’s Office.
- Last, J. M., ed. (1995). A Dictionary of Epidemiology, 3rd edition. New York: Oxford University Press.
- Last, J. M. (1998). Public Health and Human Ecology, 2nd edition. Stamford, CT: Appleton and Lange.
- Leavitt, J. W. (1997). Typhoid Mary: Captive to the Public’s Health. Boston: Beacon Press.
- Prineas, R. J.; Goodman, K. W.; Soskolne, C. L.; Buck, G.; Feinleib, M.; Last, J. M.; and Andrews, J. S. (1998). “Findings from the American College of Epidemiology’s Survey on Ethics Guidelines.” Annual of Epidemiology 8(8):482–489.
- Richter, E.; Soskolne, C. L.; and LaDou, J. (2000). “Efforts to Stop Repression Bias by Protecting Whistleblowers.” International Journal of Occupational and Environmental Health 6(3):381–383.
- Soskolne, C. L. (1989). “Epidemiology: Questions of Science, Ethics, Morality, and Law.” American Journal of Epidemiology 129(1):1–18.
- Soskolne, C. L. (1996). “Population Health Research Wins ‘Reprieve’ in Europe.” Epidemiology 7(4):451–452.
- Soskolne, C. L.; Jhangri, G. S.; Hunter, B.; and Close, M. (1996). “Interim Report on the Joint International Society for Environmental Epidemiology (ISEE)–Global Environmental Epidemiology Network (GEENET) Ethics Survey.” The Science of the Total Environment 184:5–11.
- Soskolne, C. L., and Light, A. L. (1996). “Towards Ethics Guidelines for Environmental Epidemiologists.” The Science of the Total Environment 184:137–147.
- World Health Organization (1996). “WHO/ISEE International Workshop on Ethical and Philosophical Issues in Environmental Epidemiology—Report on a WHO Meeting.” The Science of the Total Environment 184:131–136.
- World Medical Association (1976). “The Declaration of Helsinki. Recommendations Guiding Medical Doctors in Biomedical Research Involving Human Subjects.” Journal of the Irish Medical Association 69(3):74–75.