Social Determinants of Health 4 DQ 2

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EDITORIAL

THE ETHICAL IMPLICATIONS OF THE SOCIAL DETERMINANTS OF HEALTH: A GLOBAL RENAISSANCE FOR BIOETHICS

In this special issue, Bioethics explores the ethical issues that relate to the social determinants of health. As the articles demonstrate, the recognition that social factors help to determine a population’s health offers bioethics new challenges and new opportunities. With this recog- nition, fundamental bioethical concepts, such as cau- sation, autonomy, rights, and justice, take on new meanings. Likewise, mainstay bioethical issues, including the equitable distribution of resources, the duties of pro- fessionals, and the conflict between paternalism and autonomy, become amenable to new perspectives.

The realization that social forces help to determine health is hardly new. For millennia people have recog- nized a relationship between the social environment and disease. In the 19th century, sanitarians blamed the rampant filth of growing cities for the incessant outbreaks of disease. Later progressive reformers lambasted both poverty and poor working conditions for disease and premature death. The pioneers of epidemiology docu- mented these relationships.

The field of bioethics has never been closed to such concerns. Since its inception in the 1960s and 1970s, however, bioethics has deployed much of its intellectual energy on the moral issues that relate to the development, distribution, and delivery of health care services. In so doing, the field reflected medicine’s eclipse of public health in the 20th century. As medicine became predomi- nant and illness became more and more amenable to individualized medical treatment, ethical discourse came to emphasize clinical encounters. At the same time, as disease and health increasingly came to be seen as result- ing from individual factors, individuals began to be viewed as morally culpable for both their illnesses and the impact of those illnesses on others.

Not surprisingly, given the importance that bioethics placed upon individual patients and providers, autonomy surfaced as a key concern. In the early years bioethicists focused on the autonomy of patients. Following the lead of John Stuart Mill, bioethicists revealed the dangers of medical paternalism and explained why and how patient autonomy should be respected. In this they were highly successful, as informed consent became both widely regarded and legally established.

Individual autonomy remained of paramount interest in the 1990s. By then, however, the concern widened to include the autonomy of physicians. At least within the USA, physicians criticized managed care for interfering with their ability to make decisions for their patients and infringing upon their professional autonomy. And throughout the developed world, as health care costs rose, market solutions were debated. Patients began to be viewed as ‘consumers’ of medical care instead of as patients in need of treatment and care. Not surprisingly, once patients were seen as consumers responsible for selecting their own healthcare in market transactions, some ethicists were apt to disavow physicians’ fiduciary duties. Caveat emptor replaced the duty of beneficence as the invisible hand of the market was viewed as the source of just outcomes. Frequently neglected in mainstream bioethical discourse of this era – although well noted by bioethicists working from feminist and communitarian traditions – was the fact that individuals are never simply self-determined but are selves nestled in relationships with other individuals, communities, and the wider world.

This neglect is vanishing. With globalization and the rise of pandemics including, HIV/AIDS, and new global threats, such as global warming, the deep connections between individuals, communities, and the wider world can no longer be overlooked. Moreover, although many empirical questions remain unanswered, voluminous research has now firmly demonstrated the existence of significant disparities in health between the rich and poor, across the globe and within nations. As the World Health Organization’s Commission on Social Determinants of Health recently stated: ‘These inequities in health, avoid- able health inequalities, arise because of the circum- stances in which people grow, live, work, and age, and the systems put in place to deal with illness. The conditions in which people live and die are, in turn, shaped by political, social, and economic forces.’1 In response, bioethics must expand its horizons and consider the ethical issues that arise from the social forces that help to determine health, as well as the ethical problems that result from interven- tions that target those forces.2

1 WHO. Commission on Social Determinants of Health. 2008. Closing a Gap in a Generation: Health Equity Through Act on the Social Deter- minants of Health, Final Report on the Commission on Social Determi- nants of Health. Geneva: WHO. Available at: http://whqlibdoc.who.int/ hq/2008/WHO_IER/CSDH_08.1_eng.pdf 2 D. Brock. Broadening the Bioethics Agenda. Kennedy Inst Ethics J 2000; 10: 21.

Bioethics ISSN 0269-9702 (print); 1467-8519 (online) doi:10.1111/j.1467-8519.2008.00719.x Volume 23 Number 2 2009 pp ii–v

© 2009 The Authors. Journal compilation © 2009 Blackwell Publishing Ltd., 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA.

As this Special Issue attests, bioethics has answered the call. While the traditional issues and principles that have dominated the field continue to generate important insights and discussions, other topics have emerged and are being analysed from a wide range of new perspectives. For example, a subfield of bioethics, generally referred to as public health ethics, has come of age. Focusing on questions of public health and public health practice, bioethicists have carried old questions about autonomy and paternalism to new areas including the state’s power to limit individual liberty in order to promote public health. Thus some bioethicists, such as Lawrence O. Gostin3 and Amitai Etzioni4 have emphasized a commu- nity’s right to self-protection and the limits that this places upon individual autonomy. Others, such as Marion Moser Jones and Ronald Bayer, have questioned bioethics’ traditional disdain for paternalism while asserting that perhaps in some instances it is indeed appropriate for governments to enact laws, such as those requiring individuals to wear seatbelts, that limit indi- vidual autonomy in order to improve a population’s health.5 While such discussions seldom consider the role of social determinants explicitly, these debates arise from a discontent with the atomistic assumptions that social determinants dissolve.

In recent years, bioethicists have also paid attention to the ethics of public health interventions directed at ill- nesses which are linked to social determinants. In this issue, the articles by Paula Boddington and David Shaw exemplify different ways of addressing such questions. Each article is written with a firm appreciation of social determinants. And each moves bioethics away from the clinical encounter to a broader social setting.

In Heart Disease and Social Inequality: Ethical Issues in the Aetiology, Prevention and Treatment of Health Disease, Paula Boddington analyzes the ethics of prevent- ing and treating heart disease. In contrast to traditional bioethical discussions, which generally focus on the ethics of clinical research and treatment, Boddington analyses the ethical issues that arise from broad public health policies. Her piece begins with two critical observations: heart disease is distributed unequally and its etiology is complex and multi-causal. With these observations, she establishes that a discussion of the ethics of heart disease prevention and treatment must move not only beyond clinical medicine, but beyond individually-oriented

solutions. It must consider the possibility, and ethical implications, of broader social changes. As Boddington notes, ‘Distributive justice is embedded in debate about strategies for treatment and prevention.’ (123) Common interventions, such as those that warn individuals about ‘risk factors’ may help prevent some cases of disease. They may also respect or even facilitate the choices of individuals. At the same time, however, they result in an inappropriate attribution of responsibility to individuals and may increase distributive inequities, both because some populations may be in a better position to heed such warnings and because such interventions decrease the visibility of socially-determined causal factors.

David Shaw’s paper, Tackling Socially Determined Dental Inequalities: Ethical Aspects of Childsmile, The The National Child Oral Health Demonstration Pro- gramme in Scotland, also engages the ethical dilemmas that arise from public health interventions. Childsmile is a multifaceted intervention designed to reduce both the incidence of and disparities of dental caries among chil- dren. The program includes both broadly-based and narrowly targeted arms. By examining Childsmile from a Rawlsian perspective, Shaw illuminates the tensions that exist between population-based and more targeted mea- sures, as well as the tensions between maximizing health and reducing disparities, prevention and treatment, and ultimately utility and justice. According to Shaw, by incorporating both population-wide and high-risk strat- egies, Childsmile may mitigate some of these tensions, though only ‘time will tell.’ (131) In so concluding, Shaw demonstrates fidelity to both context and empiricism, showing that while a bioethical analysis informed by social determinants may grapple with broad, population- wide issues, its conclusions remain contingent upon the particulars of social facts and very specific programs.

In Justice, Stigma, and the New Epidemiology of Health Disparities, Andrew Courtwright illustrates how the rec- ognition of social determinants can raise new questions about old issues. Bioethicists have long criticized stigma- tization. But for the most part, they have focused on its violation of the respect due to individuals qua individu- als. With social determinants in mind, Courtwright demonstrates that stigmatization both arises from and constitutes a social determinant of health. That leads him to ask about society’s obligations to foster conditions that reduce stigmatization. Like Shaw, Courtwright utilizes Rawls to build his case; indeed like Norman Daniels,6 Courtwright attempts to show how Rawls’ con- struct of justice as fairness can explain why society has an

3 L. O. Gostin. 2009. Public Health Law: Power, Duty, Restraint. Berkeley & Los Angeles: University of California Press. 4 A. Etzioni, 1999. The Limits of Privacy. New York: Basic Books. 5 M. M. Jones & R. Bayer. Paternalism and Its Discontent: Motorcycle Helmet Laws, Libertarian Values and Public Health. Am J Public Health 2007; 97; 2: 208–217.

6 N. Daniels. 2008. Just Health: Meeting Health Needs Fairly. Cambridge & New York: Cambridge University Press.

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© 2009 The Authors. Journal compilation © 2009 Blackwell Publishing Ltd.

obligation to address social determinants. By so doing, Courtwright not only expands our understanding of stig- matization as a social determinant, he also suggests the close relationship between bioethics and political and moral theory.

The close nexus between bioethics and political and moral theory becomes even more pronounced once we recognize the global dimension of social determinants. The medical perspective is naturally bounded by the human body; the same is not true of social determinants. They have no simple boundary. So when we look at the social determinants of health, our focus necessarily becomes global. In making that shift, we leave behind not only bioethics’ traditional emphasis on autonomy and the moral responsibilities of individuals, but also domes- tic law and well-entrenched norms. We enter less familiar territory, where political and moral philosophy – and perhaps human rights – serve as our primary guideposts.7

The global dimension of social disparities is striking. As Audrey R. Chapman points out in Globalization, Health, and Human Rights, at the end of the 20th century, 1.2 billion people in the world lived on less than $1 dollar a day and half the world’s population lived on 2 dollars a day. Because of the connection between absolute poverty and poor health, poverty is an international determinant of health. With additional resources, developing coun- tries could improve the health of their people.

Chapman argues that, unlike the individual right to health, the right to development is a collective right that could address the impact of poverty as a social determi- nant in a way that individual rights cannot. A United Nations Declaration recognized the human right to development in 1986. In the following words:

The right to development is an inalienable human right by virtue of which every person and all peoples are entitled to participate in and contribute to and enjoy economic, social cultural and political development, in which all rights and fundamental freedoms can be fully realized.8

In this way the duty to fulfill the right to development, a positive right, is imposed on all peoples for all peoples, a vision that moves away from the particularism of nation- alism, and embraces a more cosmopolitan stance. There is little question that this collective right, if realized, would go a long way in changing the social, political, and

economic conditions that are responsible for the diseases of poverty.

In Globalization, Human Rights and the Social Deter- minants of Health, Ashley M. Fox and Benjamin Mason Meir cover similar terrain but make a different argument. They contend that globalization, understood as the inter- dependence of the world’s people, involving the integra- tion of economies, culture, technologies, and governance, and under the influence of neoliberal ideology, has ben- efitted rich countries much more than poor countries. As globalization has spread, global injustice has followed. Fox and Meir argue that a human rights approach would do a better job of improving health and welfare, globally, but especially for the global poor. Nonetheless, Fox and Meir point out that in order for the right to the highest attainable standard of health to be as effective as it can be, it must be understood by the legal community as well as human rights activists to incorporate the social deter- minants of health. They are also concerned that many of those who are involved in the creation of government policy have a narrow understanding of the right to health, and their country’s commitment to the highest attainable standard of health globally.

Both of these rights-based approaches to poverty, global disease, and avoidable deaths offer compelling accounts because they assign responsibility for health and development to identifiable others. Still, as Fox and Meir suggest, we are a long way away from a time when such rights are in fact widely respected and fulfilled. The source of the problem may be that, even though there is a universal right to the highest attainable standard of health and a collective right to development, without a widely adopted cosmopolitan ethic, few will funnel into the global social order the resources that are needed to meet these rights.

Nonetheless, without the help of scientific data about the causes of disease, including the social determinants, a cosmopolitan ethic on its own has little chance of having a significant impact on global health. In Epidemiology and Social Justice in Light of Social Determinants of Health Research, Sridhar Venkatapuram and Sir Michael Marmot underscore the importance of collaboration between ethics and epidemiology in a bioethics commit- ted to global social justice. Unless the bioethics conver- sation includes both epidemiologists and ethicists, neither can be confident that their work will be as effective as it could be. Importantly, Venkatapuram and Marmot note that epidemiology is informed by the moral concern with human health and its role in social justice. By the same token, the fact that bioethics is informed by the data of epidemiology ensures that its insights are not cast away as mere irrelevant postulations, but help to realize the

7 J. Mann. Medicine and Public Health, Ethics and Human Rights. Hastings Cent Rep 1997; 27: 6–13. 8 Declaration on the Right to Development. GA Res/128 adopted 4 Dec. 1986. UN GAOR. 41 Sess. Annex UN Doc. A/Res/41128: 1986.

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concern for health and human welfare shared by ethics and epidemiology. Interesting, too, is the fact that many of the non-biological, psycho-social determinants recog- nized by epidemiologists to be implicated in health are themselves objects of morality. The list of possible psycho-social determinants of health that Venkatapuram and Marmot identify reads like a litany of moral virtues: autonomy, dignity, respect, agency, trust and reciprocity. In the end, it might turn out that ethical conduct is itself a social determinant of health.

Ultimately, Venkatapuram and Marmot present an ambitious agenda for a bioethics informed by the pres- ence of social determinants. That agenda demands rethinking fundamental premises and reformulating the boundaries between bioethics and other fields. More broadly, their paper and the others in this special issue demonstrate the promise of and the need for a renais- sance in bioethics. Although its full contours cannot yet be depicted, the outlines of bioethics’ next incarnation are discernable. Building upon its unique strengths as an interdisciplinary field, a re-imagined bioethics will expand its interdisciplinary reach, drawing more capa- ciously from political and economic theory, international politics and law, and theories of global justice. Furthering

its tradition as a field of applied ethics, bioethics will remain open to empirical data, but it will gain its ground- ing not in the clinic but from social, economic, and epidemiological research. Continuing its fusion of descriptive and prescriptive ethics, a bioethics informed by social determinants will embrace the language of advocacy, relate to social movements, and connect with NGOs and other institutions of civil society even though by so doing, it may need to reexamine the comfort of its commitment to neutrality, and academic insularity.

In short, the curtain has been pulled open. Bioethics is no longer ignoring the social factors that influence health, or the grave disparities that endanger it. Having seen social determinants, bioethics is confronting a wider and more complex set of issues and is drawing from and informing a more diverse array of disciplines. The risks are daunting. The promises are great.

PATRICIA ILLINGWORTH AND WENDY E. PARMET

Acknowledgement

We wish to thank Clancy Pegg for her editorial wisdom, careful eye, and patient demeanor.

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© 2009 The Authors. Journal compilation © 2009 Blackwell Publishing Ltd.