Education Standards of Care and Malpracticen Assignment

P o in t-C o u n te rp o in t

(Public) Health and Human Rights in Practice

George J. Annas Wendy K. Mariner

Boston University

Abstract Public health’s reliance on law to define and carry out public activities makes it impossible to define a set of ethical principles unique to public health. Public health ethics must be encompassed within— and consistent with— a broader set of principles that define the power and limits of governmental institutions. These include human rights, health law, and even medical ethics. The human right to health requires governments not only to respect individual human rights and personal freedoms, but also, importantly, to protect people from harm from external sources and third parties, and to fulfill the health needs of the population. Even if human rights are the natural language for public health, not all public health professionals are comfortable with the language of human rights. Some argue that individual human rights— such as auton- omy and privacy— unfairly limit the permissible means to achieve the goal of health protection. We argue that public health should welcome and promote the human rights framework. In almost every instance, this will make public health more effective in the long run, because the goals of public health and human rights are the same: to promote human flourishing.

K e y w o rd s health and human rights, health law, bioethics, public health ethics, surveillance

Public health ethics is uncertain in theory and pragmatic in practice. Public health practitioners usually see themselves as the “good guys,” doing their best to protect and improve health, goals that are seldom contested. It is not public health’s goals but its methods that provoke ethical controversy. New Jersey residents surely wanted protection from the Ebola virus, but Gov- ernor Chris Christie’s heavy-handed and unnecessary quarantine of Kaci

Journal o f Health Politics, Policy and Law, Vol. 41. No. 1. February 2016 DOI 10.1215/03616878-3445659 © 2016 by Duke University Press

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Hickox to “save lives” provoked considerable backlash (Drazen et al. 2014: 2029). In the absence of any authoritative code of public health ethics, public officials can pick and choose ethical principles according to whether they support a desired method of achieving policy goals. For example, principles of autonomy may be used to justify access to contraception and abortion, while appeals to communitarian values are used to defend man- datory immunizations (Mariner and Annas 2014).

This cafeteria approach to ethics satisfies almost no one. Thus, it is not surprising that some organizations and scholars seek a more coherent set of principles to guide public health decision making— a code of ethics that could offer a defensible moral foundation for making policy decisions facing public health (Lee 2012).

The development of any statement of public health ethics immedi- ately confronts a problem. Public health is a profession, and most codes of professional ethics are limited to relationships among those professionals and with their clients. Understandably, however, there is little interest in prescribing rules to govern how officials treat each other. Rather, it is the relationship between public health officials and their “clients”— the public— that gives us pause. For the most part, the relationship between public health practitioners and the public is unlike the relationship between other professionals, such as physicians and lawyers, with their patients and clients. Public health programs are often created and implemented through law— to require or forbid specific actions. It is the coercive power of the law to impose mandatory rules that can engender resistance and contro- versy, especially where the public is not convinced that a particular rule is fair or justified (Mariner, Annas, and Glantz 2005; Mariner, Annas, and Parmet 2009).

More important, public health’s reliance on law to define and carry out public activities makes it impossible to define a set of ethical principles unique to public health. Laws must be based on independent principles that account for many competing values, not only the health of the public. Justifiable laws must consider the value of justice, equality, liberty, secu- rity, freedom from discrimination, privacy, the environment, educational and economic opportunity, and access to essential services, among other values, in addition to health. For this reason, parochial proposals that assume that public health trumps all other values have not taken root. Such proposals fail to acknowledge that public health is a social endeavor and cannot be viewed in isolation from the social institutions of which it is a part.

Public health ethics, then, must be encompassed within— and consis- tent with— a broader set of principles that define the power and limits

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of governmental institutions. These include human rights, health law, and even medical ethics (Annas 2015). These three overlap and often reinforce each other, but global human rights have been recognized for the past two decades as the primary source of global public health ethics. Both health law and bioethics supplement human rights. Law is, of course, jurisdic- tional. It results from a (ideally legitimate) political process in a particular country. Bioethics, especially its subcategory of medical ethics, defines the obligations of physicians to their patients.

H u m an R ights as th e F o u n d a tio n fo r Public H e a lth P rogram s

Human rights and medical ethics were born simultaneously at the Nur- emberg trials following World War II. The International Military Tribunal at Nuremberg articulated the Nuremberg Principles, and the subsequent Doctors’ trial articulated the Nuremberg Code, including the doctrine of informed consent (Annas 2005). The United Nations quickly adopted the Universal Declaration of Human Rights in 1948 and the Geneva Conven- tions in 1949. Government obligations to respect, protect, and fulfill human rights were further elaborated in treaties, most notably the International Covenant on Civil and Political Rights, and the International Covenant on Economic, Social, and Cultural Rights. Approximately forty years later, UNESCO took on the task of uniting bioethics and human rights into one document: the Universal Declaration on Bioethics and Human Rights, which was adopted by 180 countries in 2005 (Andorno 2009; UNESCO 2005). The purpose of the declaration is primarily to guide states, indi- viduals, and corporations in dealing with issues in medicine and human research. Its principles are set forth in Article 3:

Human dignity, human rights and fundamental freedoms are to be fully respected.

The interests and welfare of the individual should have priority over the sole interest of science or society.

The Declaration on Bioethics and Human Rights emphasizes consent, equality, privacy, and nondiscrimination. It has been praised for setting an international standard that applies basic human rights principles to bio- ethics, even though many of the principles remain somewhat vague and abstract.

There is a major paradox in human rights: they are widely supported in principle, but often violated by governments, including even nonderogable

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rights like the right to be free from torture. Public health professionals are not torturers, of course, but the history of public health offers ample examples of marginalizing human rights when officials believe, rightly or wrongly, that the public’s health is at stake (Annas 2010). This is why the authors of “Health and Human Rights” argued:

Unfortunately, public health decisions to restrict human rights have frequently been made in an uncritical, unsystematic, and unscientific manner. Therefore, the prevailing assumption that public health, as articulated through specific policies and programs, is an unalloyed public good that does not require consideration of human rights norms must be challenged. For the present, it may be useful to adopt the maxim that health policies and programs should be considered discriminatory and burdensome on human rights until proven otherwise. (Mann et al. 1994: 15-16)

This simply means that the burden of proof should be on governments to show that their policies are justifiable and do not unnecessarily infringe on human rights. If this view seems unusually harsh and skeptical of government action, it should be recalled that it was shared by Mann’s coauthors, who represented the spectrum of human rights and public health: Harvey Fineberg, then the dean of the Harvard School of Public Health; leading health and human rights advocate Sofia Gruskin; health law experts Troyen Brennan and Zita Lazzarini; and public health advocate Lawrence Gostin. Mann and his coauthors are hardly human rights radicals or public health deniers. Rather, they recognized, as did those who came after them, that public health is most effective when it protects human rights, especially the rights of minorities and disadvan- taged people. Public health and human rights are synergistic. As Mann and his coauthors put it in 1994, there is “an inextricable relationship between health and human rights” (21). Thereafter, Mann usually just said that health and human rights are inextricably linked.

Human rights are linked with health because they require governments not only to respect individual human rights and personal freedoms, like privacy and autonomy, but importantly to protect people from harm from external sources and third parties, and to fulfill the health needs of the population (Grodin et al. 2013). Public health’s mission is to accomplish much of this responsibility. Public health programs protect people from contaminated food and water, for example, and also fulfill health needs by offering education and some health services, such as substance use

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treatment clinics. Indeed, since public health predominantly acts through government institutions, it should be carrying out the government’s duty to respect, protect, and fulfill the right to health.

Yet, even if human rights are the natural language for public health, it is not a language that all public health professionals are comfortable with. Our public health colleagues Amy Fairchild and Ronald Bayer, for example, find Mann and his colleagues’ warning (which concludes the first quote above) that “health policies and programs should be consid- ered discriminatory and burdensome on human rights until proven oth- erwise” to be “extreme” (see p. 124 of the Point essay). They agree that “human rights [has] emerged as a complementary lens [the other is bioethics] through which to evaluate public health practice, particularly on a global stage” (124), but nonetheless seem worried that applying human rights to public health too vigorously could erode the ability of public health to protect the health of the public.

H u m a n R ig h ts , P u b lic H e a lth , a n d S u rv e illa n c e

Public health surveillance offers a useful example of relationships among human rights, health law, bioethics, and public health. Fairchild and Bayer are eloquent supporters of public health surveillance, and they and their colleagues argue that protection of human rights too often interferes with public health goals (Fairchild et al. 2007). The argument cannot be that human rights do not value public health goals, however, because the human right to health expressly values health. Rather, the concern appears to be that protecting individual rights could encumber certain methods of sur- veillance that public health officials prefer to use. Apparently, the pre- ferred method is to obtain identifiable information about individuals without their consent, and often without their knowledge. Surveillance is a means to an end. It identifies people with specific infections, illnesses, or conditions. Ideally, that information will be used to achieve a useful end— improved public health. But the end is not in controversy. Rather, the argument appears to be that human rights— specifically the rights to autonomy, privacy, and to decide whether to participate in research— unfairly limit the means (or the method) available to achieve the goal of health protection.

To be sure, there are instances in which public health officials need to intervene quickly without asking permission. No one disputes that public health officials should be able to contact affected individuals in order to find

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the source of a contagious disease outbreak or exposure to toxic chemicals or contaminated food or water. Indeed, the human rights imperative to protect people from harm would support that form of surveillance to enable action to eliminate sources of disease, as early disease reporting was jus- tified (Mariner and Annas 2014). Nevertheless, such urgent situations are relatively rare today. Most public health surveillance data are collected for analysis, statistical reports, and research, rather than for immediate use (Thacker 2010; Mariner 2007). While the data are certainly valuable for those purposes, there is rarely any urgency that would justify overriding human rights to collect the information.

Disease surveillance programs collect personally identifiable data on more than seventy conditions, from Ebola to Lyme disease to asthma to lupus (CDC 2015). In addition, states have created registries of immuni- zations, cancer patients (National Program of Cancer Registries, 42 U.S.C. § 280e), prescriptions for controlled substances (Finklea, Sacco, and Bagalman 2014), and newborn blood samples (Baby’s First Test 2015). In 2014, Congress recognized that newborn screening blood samples are often used for research purposes and amended federal law to require consent to the use of such samples for research in accordance with federal regulations governing research with human subjects (Newborn Screening Saves Lives Reauthorization Act of 2014, § 12, amending 42 U.S.C. §§ 300b-8-300b-15). Beyond public health programs, governments collect claims data from health insurance companies to create All Payer Claims Databases in order to analyze the cost and, ultimately, the quality of health care (Porter et al. 2014).

Two years after Edward Snowden’s revelation of the National Security Agency (NSA)’s bulk data collection, it should not be surprising that the public might be wary of intrusions on their health information privacy (Madden 2014). Public health uses surveillance data in much the same way that the NSA uses telephone records, by mining the information to see what might be learned. Medical and research organizations, not to mention Google and other commercial enterprises, would welcome the addition of medical information to Big Data. And, since databases almost invari- ably invite data mining, there may be growing pressure to share public health surveillance data for many more purposes. In these circum- stances, the public may well wish for more, not less, control over personal information.

The right to autonomy, including the right to decide whether to par- ticipate in research— or to have one’s identifiable information used for

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research— is sometimes accused of making research and surveillance “impracticable” or even impossible. Some researchers and public health advocates, including Fairchild and Bayer, argue that the goal of public health should outweigh the right to consent to surveillance or research. One argument for this view— that if everyone does not consent to participate, then the data will not represent the population as a whole— is highly questionable (Rothstein and Shoben 2013). After all, the National Insti- tutes of Health, as well as private research institutions, know how to con- duct sophisticated research with only a sample of the population. Con- temporary discussions of the creation of multiple national biological databanks are ongoing. Nonetheless, it seems fair to conclude that no matter what the medical or public health promise of such databanks, per- sonal information will not be collected, stored, or analyzed without the consent of all whose information is included in these banks (Annas and Elias 2015: 191-215). A second argument is that individual consent is impractical, because it would require taking the time to obtain consent from many individuals, which would entail some administrative costs (Hoffman and Podgurski 2012). If there is a normative principle at work here, it is that saving money and minimizing administrative burdens are more important than the value of individual autonomy. Of course, virtually every govern- ment policy requires money and effort on someone’s part. Thus, the argument boils down to the idea that human rights need not be respected whenever they might cost time or cost money.

This argument is often supported by consequentialist or utilitarian principles, which claim the primacy of the common good. This assumes that a research project or surveillance program will actually produce something that improves health or at least prevents harm. In this view, human rights can be sacrificed when there is a hope that something good will result from the research in the future. This is a thin reed on which to build an ethical principle. Governments have a duty to protect the right to health by protecting people from harm and providing access to care. But human rights also limits some of the methods that government can use to carry out its duty. There are lines that government should not cross. An ethics that values health in the abstract above all other values would erase those lines.

This is not to suggest that all surveillance programs require consent. Rather, the collection and use of identifiable information requires jus- tification within the human rights framework, in which the default prin- ciple is that research requires consent. Basic human rights doctrine, for

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example, prohibits certain state actions, including murder, torture, geno- cide, and slavery, even if the survival of the nation itself is at stake. The failure to collect a person’s health information does not pose an existential threat to the nation. Public health authorities should recognize limits and not cross them, even, for example, in cases where they think arbitrary detention is for the public good— a view that reemerged from early twentieth-century mothballs in the aftermath of 9/11 and the threat of a biological attack on the United States.

The same year Mann and his colleagues published their “Health and Human Rights” article, Mann also coauthored an article with Lawrence Gostin that suggested a methodology, based on the environmental impact statement, to determine the human rights impact of public health policies: the “Human Rights Impact Assessment” (HRIA) framework (Gostin and Mann 1994). The goals of using this tool were to introduce public health practitioners to the world of human rights and “to achieve the best possible public health outcomes while protecting the human rights of individuals and populations” (Gostin and Mann 1994: 78). A review published in 2015 concludes that, although “numerous challenges remain, there have been remarkable advances” in adopting and using the HRIA tool since 1994 (MacNaughton 2015: 73).

We believe that public health should welcome and promote the human rights framework. In almost every instance, this will make public health more effective in the long run, because the goals of public health and human rights are the same: to promote human flourishing. Moreover, as a practical matter, a rearguard action against applying human rights doctrine to public health generally, and to surveillance in particular, is too late. This is because public health is now rightly seen as a matter of global concern, focusing not just on diseases like Ebola and HIV/AIDS but also on the social determinants of health: conditions that expose people to disease, such as poverty and climate change.

Conclusion

We strongly support the health and human rights framework for public health, while recognizing that it need not be an exclusive guide and can usefully be supplemented with both health law and bioethics. The human rights framework is based on human dignity and requires governments to treat all humans equally. This is also the core of social justice agendas: to treat all people fairly and as equals, and to never discriminate on the basis of race, gender, ethnicity, or social or economic class.

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George J. Annas is Warren Distinguished Professor and director o f the Center fo r Health Law, Ethics, and Human Rights o f Boston University School o f Public Health, and professor in Boston University School o f Medicine and School o f Law. He is a cofounder o f Global Lawyers and Physicians, a transnational professional association tha t promotes human rights and health. Annas is the author or editor o f twenty books on health law and bioethics, including Genomic Messages (2015, w ith Sher- man Elias), Worst Case Bioethics: Death, Disaster, and Public Health (2010), Public Health Law (2007), American Bioethics (2005), and The Rights o f Patients (3rd ed., 2004). He is a fellow o f the American Association fo r the Advancement o f Science, a member o f the National Academy of Medicine, and a former member of the National Academy o f Sciences' Human Rights Committee (2006-15).

W endy K. M ariner is the Edward R. Utley Professor o f health law at Boston Uni- versity School o f Public Health, professor o f law at Boston University School o f Law, and director o f the JD-MPH Dual Degree Program. Her research focuses on health insurance, the Affordable Care Act, risk regulation, public health, privacy, and research w ith human subjects. She has published extensively in the legal, medical, and policy literature, most recently Public Health Law (2nd ed., 2014, w ith George J. Annas).

References

Andomo, Roberto. 2009. “Human Dignity and Human Rights as a Common Ground for a Global Bioethics.” Journal o f Medicine and Philosophy 34, no. 3: 223^10. dx.doi.org/10.1093/jmp/jhp023.

Annas, George J. 2005. American Bioethics: Crossing Human Rights and Health Law Boundaries. New York: Oxford University Press.

Annas, George J. 2010. Worst Case Bioethics: Death, Disaster, and Public Health. New York: Oxford University Press.

Annas, George J. 2015. “Bioethics, Health Law, and Human Rights.” In Routledge Handbook o f Medical Law and Ethics, edited by Yan Joly and Bartha Rnoppers, 11-26. London: Routledge.

Annas, George, and Sherman Elias. 2015. Genomic Messages: How the Evolving Science o f Genetics Affects Our Health, Families and Future. San Francisco: HarperOne.

Baby’s First Test, Newborn Screening Clearinghouse. 2015. “About Newborn Screening/Conditions Screened by State.” www.babysfirsttest.org/newborn-screening /states.

CDC (Centers for Disease Control and Prevention). 2015. “2015 National Notifiable Diseases.” United States, wwwn.cdc.gov/nndss/conditions/notifiable/2015/.

138 Journal o f Health Politics, Policy and Law

Drazen, Jeffrey, Rupa Kanapathipillai, Edward W. Campion, Eric J. Rubin, Scott M. Hammer, Stephen Morrissey, and Lindsey R. Baden. 2014. “Ebola and Quarantine.” New England Journal o f Medicine 371, no. 21: 2029-30.

Fairchild, Amy L., Ronald Bayer, James Keith Colgrove, and Daniel Wolfe. 2007. Searching Eyes: Privacy, the State and Disease Surveillance in America. Berkeley: University of California Press; New York: Milbank Memorial Fund.

Finklea, Kristin, Lisa N. Sacco, and Erin Bagalman. 2014. Prescription Drug Mon- itoring Programs. CRS Report for Congress, R42593.Washington, DC: Congres- sional Research Service. www.fas.org/sgp/crs/misc/R42593.pdf.

Gostin, Lawrence, and Jonathan Mann. 1994. “Toward the Development of a Human Rights Impact Assessment for the Formulation and Evaluation of Public Health Policies.” Health and Human Rights 1, no. 1: 58-80.

Grodin, Michael, Daniel Tarantola, George Annas, and Sofia Gruskin. 2013. Health and Human Rights in a Changing World. New York: Routledge.

Hoffman, Sharona, and Andy Podgurski. 2012. “Balancing Privacy, Autonomy and Scientific Needs in Electronic Health Records Research.” Southern Methodist University Law Review 65, no. 85: 85-144.

Lee, Lisa M. 2012. “Public Health Ethics Theory: Review and Path to Convergence.” Public Health Reviews 34, no. 1: 1-26.

MacNaughton, Gillian. 2015. “Human Rights Impact Assessment: A Method for Healthy Policymaking.” Health and Human Rights Journal 17, no. 1: 63-75.

Madden, Mary. 2014. “Public Perceptions of Privacy and Security in the Post- Snowden Era.” Pew Research Center Report. November 12. www.pewintemet.org /2014/11/12/pubIic-privacy-perceptions/.

Mann, Jonathan M., Lawrence O. Gostin, Sofia Gruskin, Troyen Brennan, Zita Lazzarini, and Harvey Fineberg. 1994. “Health and Human Rights.” Health and Human Rights 1, no. 1: 7-23. Reprinted in Health and Human Rights: A Reader, edited by Jonathan M. Mann, Sonia Gruskin, Michael A. Grodin, and George J. Annas, 7-20. New York: Routledge, 1999.

Mariner, Wendy K. 2007. “Mission Creep: Public Health Surveillance and Medical Privacy.” Boston University Law Review 87, no. 2: 347-95.

Mariner, Wendy K., and George J. Annas. 2014. Public Health Law, 2nd ed. New Providence, NJ: LexisNexis.

Mariner, Wendy K., George J. Annas, and Leonard H. Glantz. 2005. “Jacobson v. Massachusetts'. It’s Not Your Great-Great-Grandfather’s Public Health Law.” American Journal o f Public Health 95, no. 4: 581-90.

Mariner, Wendy K., George J. Annas, and Wendy E. Parmet. 2009. “Pandemic Pre- paredness: A Return to the Rule of Law.” Drexel Law Review 1, no. 2: 341-82.

Porter, Jo, Denise Love, Ashley Peters, Jane Sachs, and Amy Costello. 2014. “The Basics of All-Payer Claims Databases: A Primer for States.” Issue brief, Robert Wood Johnson Foundation’s State Health and Value Strategies program, January. www.rwjf.org/en/library/research/2014/01/the-basics-of-all-payer-claims-databases -a-primer-for-states.html.

Rothstein, Mark A., and Abigail B. Shoben. 2013. “Does Consent Bias Research?” American Bioethics 13, no. 4: 27-37.

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Thacker, Stephen B. 2010. “Historical Development.” In Principles and Practice of Public Health Surveillance, edited by Lisa M. Lee, Steven M. Teutsch, Stephen B. Thacker, and Michael E. St. Louis, l—17. New York: Oxford University Press.

UNESCO (United Nations Economic, Social and Cultural Organization). 2005. Universal Declaration on Bioethics and Human Rights, www.unesco.org/new/en /social-and-human-sciences/themes/bioethics/bioethics-and-human-rights/.

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