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The Merrimon Lecture

Friday, October 4, 2013

“Health and Justice:
What’s Theory Got to Do With It?”

Ruth R. Faden, PhD, MPH

Philip Franklin Wagley Professor of Biomedical Ethics and
Director, Johns Hopkins Berman Institute of Bioethics

The Health Justice Conference

Saturday, October 5, 2013

“Comparing Approaches to Health Inequalities and Justice:
A Dialogue on Theory, Method, and (Inter)-Disciplinarity”

Paula Braveman – University of California San Francisco
Paul Brodwin – University of Wisconsin Milwaukee
Debra DeBruin – University of Minnesota
Sarah Horton – University of Colorado Denver
Rosalina James – University of Washington
Carla Keirns – Stony Brook University
Paul Kelleher – University of Wisconsin Madison
Nicholas King – McGill University
Eva Feder Kittay – Stony Brook University
Barbara Koenig – University of California San Francisco
Carolyn Rouse – Princeton University
Jennifer Prah Ruger – University of Pennsylvania
Janet Shim – University of California San Francisco

Keynote Speaker

Ruth R. Faden, PhD, MPH is the Philip Franklin Wagley Professor of Biomedical Ethics and founding Director of the Johns Hopkins Berman Institute of Bioethics. Dr. Faden’s current research focuses on justice theory and on national and global challenges in health care systems, health systems design and priority setting, and access to the benefits of global investments in biomedical research. She also works on ethical challenges in biomedical science and in women’s health. Dr. Faden is a member of the Institute of Medicine and has served on numerous national advisory committees and commissions, including President Clinton’s Advisory Committee on Human Radiation Experiments, which she chaired. In 2011, Dr. Faden was the recipient of Lifetime Achievement Awards from the American Society for Bioethics and Humanities (ASBH) and Public Responsibility in Medicine and Research (PRIMR). Dr. Faden is the author and editor of many books and articles on biomedical ethics and health policy including Social Justice: The Moral Foundations of Public Health and Health Policy (with Madison Powers. OUP, 2006), A History and Theory of Informed Consent (with Tom L. Beauchamp. OUP, 1986), AIDS, Women and the Next Generation (Ruth Faden, Gail Geller and Madison Powers, eds. OUP, 1991), and HIV, AIDS and Childbearing: Public Policy, Private Lives (Ruth Faden and Nancy Kass, eds. OUP, 1996).

Conference Speakers & Abstracts

Paula Braveman, MD, MPH is Professor of Family and Community Medicine and Director, Center on Social Disparities in Health at the University of California, San Francisco. Dr. Braveman’s research has been in socioeconomic and racial or ethnic disparities in maternal and infant health, informing policy development to reduce health disparities, and methodological issues in studying socioeconomic and racial or ethnic inequalities. Sample publications include: “Socioeconomic disparities in health in the U.S.: what the patterns tell us.” Am J Public Health 2010; 100(S1): S186-196 (with Catherine Cubbin et al); “Health disparities and health equity: Concepts and measurement.” Annual Review Public Health 2006;27:167-94; “Socioeconomic status in health research: one size does not fit all.” JAMA 2005;294(22): 2879-88 (with Catherine Cubbin et al.).

How should we define—and therefore study—health inequalities? Over the past two decades, distinct approaches have been taken to defining the concept of health inequalities, with corresponding differences in measurement. Some have argued that we should not approach health inequalities from a perspective based on a priori assumptions about their nature. They propose that we should simply measure health differences among individuals, comparing the healthiest with the sickest and those in-between, without grouping individuals according to predetermined social characteristics (e.g., income, education, occupation). Once the healthiest/sickest are identified, according to proponents of this un-grouped approach, we can embark on a process of seeking the likely sources of the differences. By contrast, traditional approaches to measuring health inequalities typically examine health differences by socioeconomic characteristics (e.g., education, occupation, income, wealth), by racial or ethnic group, or by other markers of social advantage/disadvantage (e.g., gender, disability, sexual orientation or gender identity). The argument for abandoning the grouped approach is that it prejudges causality, potentially obscuring full inquiry into the nature of health differences. This perspective –in one form or another– has won over a number of advocates at different times. The paper will discuss the “ungrouped” approach and why some have found it attractive from a technical perspective, as well as why it is not appropriate to answer questions about health equity, based on concepts from the fields of human rights and ethics. The conceptual basis for defining health inequalities and their implications for measurement and policy will be discussed.

Paul Brodwin, PhD is Professor of Anthropology at the University of Wisconsin Milwaukee and Adjunct Professor at the Center for Bioethics and Medical Humanities at the Medical College of Wisconsin. He is also a Core Scientist in the Center for AIDS Intervention Research in the Department of Psychiatry and Behavioral Medicine at the Medical College of Wisconsin. Dr. Brodwin’s research in medical anthropology focuses on the ethnography of bioethics and psychiatry. His most recent book, Everyday Ethics: Voices from the Front Line of Community Psychiatry (University of California Press, 2012), examines ethical decision-making among front-line mental health clinicians. Other recent publications include: “Futility in the Practice of Community Psychiatry.” Medical Anthropology Quarterly 2011; 25 (2): 189-208; “The Assemblage of Compliance in Psychiatric Case Management.” Anthropology and Medicine 2010; 17 (2): 129-143; “Mixed Methods and Bioethics Pedagogy: Suggestions for Future Research.” The American Journal of Bioethics 2008; 2 (4): 56-56.

Justice and the legitimacy of psychiatric power: The ethnographic study of everyday ethics. Everyday ethics refers to spontaneous and non-expert commentaries about right and wrong, the obligatory and the forbidden, and the legitimate uses of professional power. This paper presents an ethnography of everyday ethics among two groups with intimate knowledge of U.S. community psychiatry but radically different social locations: front-line clinicians and people with lived experience of severe illness (“consumers) who currently participate in mental health reform efforts. For clinicians, questions of justice emerge around the topic of service-worthiness: the criteria that make someone categorically deserving of publicly funded treatment. In the midst of work, clinicians can questions the legitimacy of denying services to people who are patently ill, but fall outside the bureaucratic determination of appropriate patienthood. Their self-questioning implicates core values about shared humanity as well as the inequities that get invisibly woven into local work settings. Mental health consumer-activists engage with questions of justice at a broader level: the very definition of themselves as patients rather than citizens. They criticize as unjust the regimes of power/knowledge that diminish their rights and mute their voice. Non-expert commentaries about justice in public psychiatry obviously reflect the speakers’ particular social position and life experience. More generally, however, they open a window to the shape of contemporary discourse about institutional psychiatry. Conceptions of personhood (in both a moral and jural sense) drive people’s commentaries about the just of use of psychiatric power. Field studies in everyday ethics, although descriptive, thus clarify some of the ingredients in popular normative framings of justice in this corner of the American health care system.

Debra DeBruin, PhD is Director of the Center for Bioethics and Associate Professor of Medicine at the University of Minnesota. Dr. DeBruin has served as a health policy fellow for Senator Edward Kennedy (D-MA) and has worked as a consultant to the National Academy of Science’s Institute of Medicine and the National Bioethics Advisory Commission on issues relating to the ethics of research. She was also Project Director for the Robert H. Levi Leadership Symposium on the ethics of Medicare reform. Dr. DeBruin has written on feminist perspectives on education, public health policy and justice in human subject research. Sample publications include: “Justice and the Inclusion of Women in Clinical Studies: An Argument for Further Reform.” Kennedy Institute of Ethics Journal 1994; 4(2):117-146; “Ethics Review of Social, Behavioral, and Economic Research: Where Should We Go From Here?” Ethics & Behavior 2004; 14(4):351-368 (with Raymond De Vries and Andrew Goodgame); “Looking Beyond the Limitations of Vulnerability: Reforming Safeguards in Research.” American Journal of Bioethics 2004; 4(3):76-78.

Justice and risk in pregnancy. Conceptions of risk raise questions of profound moral significance, especially in the context of pregnancy. This paper considers our culture’s dominant conception of risk in pregnancy and the role it plays as a framework for norms about how pregnancy should be managed. In this framework, pregnant women are invisible in morally significant ways despite being subjected to intense surveillance. Bioethicists tend to think about risk as a matter of beneficence. This paper discusses a feminist perspective on justice and the contribution that it can make to a moral analysis of the predominant conception of risk in pregnancy.

Sarah Horton, PhD is Assistant Professor of Anthropology at the University of Colorado, Denver. Her work in medical anthropology focuses on public policy, the ethnography of health care systems, migration and transnationalism, race and citizenship, and she works in the US Southwest and Mexico. Her research has examined oral health disparities among Latino children and migrants, as well as the public oral health care system. Sample publications include: “Stigmatized Biologies: Examining the Cumulative Effects of Oral Health Disparities for Mexican American Farmworker Children” (with Judith C. Barker). Medical Anthropology Quarterly 2010; 24(2): 199-219; “The Double Burden on Safety Net Providers: Placing Health Disparities in the Context of the Privatization of U.S. Health Care.” Social Science & Medicine 2006. 63(10): 2702-2714; “Mexican Immigrant Parents’ Interpretation of Children’s Dental Symptoms in California’s Central Valley” (with Judith C. Barker). Community Dental Health [In Press].

Ethnography and social epidemiology: Analyzing the cumulative effects of Latino farmworker children’s early childhood caries. Severe early childhood caries (ECC) can leave lasting effects of children’s physical development, including malformed oral arches and crooked permanent dentition. This paper combines ethnographic and social epidemiological approaches—in particular, the study of “embodiment” (Krieger 2005, 2008)–to the analysis of the cumulative effects of ECC on Latino farmworker youths’ physiognomies and social mobility. Taking both a multi-level and life-course perspective, this paper uses ethnography to methodologically operationalize the key theoretical contributions of the paradigm of “embodiment.” While much research in dental public health zeroes in on caregiver behaviors in causing an epidemic of ECC among Latino farmworker children, this paper instead examines the complex interplay between caregiver practices and the sociopolitical environment in shaping farmworker children’s distinctive “local biologies” (Lock 1993). I argue that a multi-level ethnographic analysis of the social, political, and biocultural contexts that shape the oral health of Latino farmworker youths can help add nuanced complexity to social epidemiological paradigms.

Rosalina James, PhD is Acting Assistant Professor in the Department of Bioethics and Humanities at the University of Washington, where she also received her PhD in Pathology in 2002. Her interests include developing strategies responsive to community interests in research, assessment of community-based participatory research partnerships, and translational research ethics. Dr. James, a member of the Lummi tribe, currently directs the Indigenous Genomics Alliance and Training cores for the Center for Genomics and Healthcare Equality and co-chairs Advancing Indigenous Research Ethics in Practice and Policy, a committee exploring successful models for tribal-university research agreements. Sample publications include “Strategies and Stakeholders: Minority Recruitment in Cancer Genetics Research” (with Joon-Ho Yu et al). Community Genetics 2008; 11(4):241-249; “Launching Native Health Leaders: Students as Community-Campus Ambassadors” (with Valerie Segrest, Teresa Madrid and Roger Fernandes). Progress in Community Health Partnerships: Research, Education, and Action 2010; 4(1):81-85; “Bringing the ‘Best Science’ to Bear on Youth Suicide: Why Community Perspectives Matter” (with Helene Starks) in Wylie Burke et al Eds. Achieving Justice Through Genomic Translation: Rethinking the Pathway to Benefit. New York: Oxford, In Press.

Transforming translational research practices to achieve goals of health equity. The potential for scientific discovery to reduce disparities largely depends on translating findings into population health outcomes. To accomplish this goal, we must address global and domestic health and health care inequities that persist despite decades of biomedical and social science research that have advanced knowledge of disease etiology, effectiveness of therapeutic medicines, interventions, and health systems. Completing the translational cycle involves transformation of standard research practices where knowledge is created within disciplinary silos rather than through interdisciplinary or cross-cultural approaches. Evidence-based findings which fail to integrate with the political and socio-economic systems that serve populations most burdened by health problems have the potential to widen rather than narrow disparity gaps. We will discuss processes by which decision-makers prioritize health issues and direct resources that incentivize the attention of researchers. We will also assess where and how building capacity for community based participatory research and other action-oriented approaches can simultaneously address deep-seated mistrust of institutional research among ethnic/racial groups, and facilitate research translation into direct benefit for medically underserved communities. Finally, we will challenge popular concepts of pipeline training as a model for creating long-term, sustainable solutions. Informal learning from academic and community knowledge bases can prepare trainees across disciplines and cultures to foster individual, institutional and social change while nurturing effective translational research.

Carla Keirns, MD, PhD, Msc is Assistant Professor of Preventive Medicine, Assistant Professor of Medicine, and Director of the Program on the History of Medicine in the Center for Medical Humanities, Compassionate Care, and Bioethics at Stony Brook University. After her medical residency in internal medicine, Dr. Keirns completed a postdoctoral fellowship in health services research through the Robert Wood Johnson Clinical Scholars Program. She has authored articles and book chapters in clinical ethics, health services research, and the history of medicine, with a focus on health disparities, chronic disease, epidemiologic transitions, and public health ethics. She is currently completing a book manuscript, entitled Measured Breath: A Short History of Asthma (under contract with Johns Hopkins University Press), on the history and sociology of asthma in the United States from the 1850s to the 21st century. Other recent publications include: “Dirty Blood: Dialysis, Prognosis and Consent” (with Susan D. Goold). Hastings Center Report (forthcoming); “Does Money Make Bioethics Go ‘Round?” (with Raymond DeVries). American Journal of Bioethics 2008; 8(8): 65-67; “Uninsured Adults Presenting to US Emergency Departments: Assumptions vs Data” (with Manya F. Newton et al). JAMA 2008; 300:1914 – 1924.

Health care justice in health reform. Beyond implementation of the Affordable Care Act (ACA) of 2010, changes in health system financing and delivery have the potential to save thousands of lives and billions of dollars. New models of health care delivery and payment are intended to alter incentives for patients and providers throughout the system. While most discussions of health care reform have focused on broadening access to health insurance and changing payment structures other changes have the potential to be almost as wide-ranging in their impacts, including report cards for hospitals and physicians, standards for “never events” for which hospitals will be penalized, and pay-for-performance and accountable care programs that tie payment to outcomes. The overarching value system embedded in these new models for payment reform is a rough utilitarianism drawn from their origins in economic analysis and plans to use financial incentives to change the behavior of physicians, hospitals, and patients. Many of these policy approaches are also based in other normative approaches to medical care. The ACA draws, for example, on welfare theories of economics and arguments about health as a driver of equality of opportunity most associated with John Rawls and his student Norman Daniels. Quality improvement programs including pay for performance and non-payment for complications are based on beneficence toward patients and a consequentialist approach to health care providers. Innovations which improve access and quality of care in the aggregate have, however, frequently been shown to have less benefit or even harm to vulnerable populations. Improvements in quality of care frequently have the ironic consequence of widening disparities, either because the populations who had the worst outcomes to start with are more difficult to reach with improved care, or because the mechanisms designed to increase access and quality destabilize institutions that have long served the poor.

Paul Kelleher, PhD is Assistant Professor of Medical History and Bioethics at the University of Wisconsin-Madison with a joint appointment in Philosophy. Dr. Kelleher’s research interests are in health equity with specific focus on: ethical issues in priority-setting and resource allocation, the source and shape of social entitlements to health protection, public health ethics and the ethics of climate change. Dr. Kelleher’s publications include: “Real and Alleged Problems for Daniel’s Account of Health Justice.” Journal of Medicine & Philosophy (forthcoming); “Energy Policy and the Social Discount Rate.” Ethics, Policy & Environment 2012; 15(1): 45-50; “Emergency Contraception and Conscientious Objection.” Journal of Applied Philosophy 2010; 27(3): 290-304; “Efficiency and Equity in Health: Philosophical Considerations” in Anthony Culyer, ed., Encyclopedia of Health Economics (Elsevier, forthcoming).

Health inequalities, relational egalitarianism, and the Layers of Justice view. Much of the philosophical literature on health inequalities seeks to establish the superiority of one or another conception of luck egalitarianism. In recent years, however, an increasing number of egalitarian philosophers have proposed replacing luck egalitarianism with alternatives that stress the moral relevance of distinct relationships, rather than the moral relevance of good or bad luck. In this paper I seek to distinguish and clarify three different kinds of relational egalitarianism. After explaining how these have been presented in the literature as competitors to one another (and not just to luck egalitarianism), I shall argue, using the domain of health justice as the illustrative example, that any successful theory of health justice should incorporate all three as three discrete planks of distributive justice. I will conclude by connecting this tripartite view to an approach to distributive justice that Jonathan Wolff has dubbed the “Layers of Justice” view. Wolff’s discussion of the “Layers” view is largely schematic, and I hope to show how the argumentative resources of the three relational planks can be used to develop it in salutary ways.

Nicholas King, PhD is Assistant Professor of Social Studies of Medicine and an Associate Member in the Department of Epidemiology and Biostatistics at McGill University. He is also Adjunct Assistant Professor of Bioethics at Case Western Reserve University. He holds a PhD in the history of science and a Masters degree in medical anthropology from Harvard University. Dr. King is the director of the MEDEC Lab (Measurement, Ethics, and Decision-making Collaborative), where he is investigating the role of ethical judgments in the statistical measurement and assessment of causality in research on health inequalities. Dr. King’s research also includes work on the ethics of biosecurity, disaster response, and public health preparedness; ethical issues in responses to emerging diseases and the development of antimicrobial resistant pathogens; and health inequalities. Select recent publications include: “Implicit Value Judgments in the Measurement of Health Inequalities” (with Sam Harper). Milbank Memorial Fund Quarterly 2010; 88(1); “Equality and Inequality in American Health Care” in Eileen E. Morrison, Ed., Health Care Ethics: Critical Issues for the 21st Century (Sudbury, MA.: Jones & Bartlett 2009): 339-354; “Networks, Disease, and the Utopian Impulse” in S. Harris Ali & Roger Keil, Ed., Networked Disease: Emerging Infections in the Global City (Malden, MA: Wiley-Blackwell 2008): 201-213.

“Just the facts ma’am?”: On the role of evidence in interdisciplinary health inequalities research. As the interdisciplinary study of health inequalities has matured, two parallel trends have accelerated: first, the production of evidence regarding the existence, causes, and potential reduction of health inequalities; second, the citation and interpretation of this evidence by researchers in multiple fields and for multiple purposes. This paper discusses several dilemmas posed by the uses (and abuses) of population-based epidemiologic evidence in the literature on ethics and health inequalities. I argue that reliance on epidemiologic evidence when making normative judgments often involves fallacious reasoning, and should only undertaken with great caution. Examples include the use of evidence from the Whitehall Study, the income inequality thesis, and the role of immortal time bias in studies of Academy Award winners.

Eva Feder Kittay, PhD is Distinguished Professor of Philosophy at Stony Brook University, New York. Her areas of expertise include feminist philosophy, feminist ethics, social and political theory, metaphor, and disability studies. Dr. Kittay is a Senior Fellow of the Stony Brook Center for Medical Humanities, Compassionate Care and Bioethics and an Affiliate of the Women’s Studies Program. Her most recent books include: Cognitive Disability and Its Challenge to Moral Philosophy, co-edited with Licia Carlson (Blackwell, 2010), Blackwell Guide to Feminist Philosophy, edited with L.Alcoff (Blackwell, 2007), Theoretical Perspectives on Dependency and Women, edited with Ellen Feder (Rowman and Littlefield, 2003), and Love’s Labor: Essays on Women, Equality, and Dependency (Thinking Gender Series, Routledge, 1999).

Is the principle of autonomy contributing to the unjust distribution of medical care? Does the principle of autonomy or the assumption that the recipient of health care is an autonomous subject skew the distribution of resources in favor of those most likely to fit that norm? It would be foolish to be sentimental about the days when the paternalism of physicians and other health care professionals was looked upon favorably. Yet the presumption of the capacity for autonomy on the part of the health care recipient has its own difficulties. One of these is the possibility that those closest to the norm are most able to take advantage of available health care, most capable of influencing the direction of research, and most likely to decide how resources are to be expended. When we combine the fact that social and economic inequalities and cultural differences can influence medical personnel’s perception of the care recipient as autonomous with the fact that many who require medical services are not good models of autonomous agents, at least at the time when they need these services, a system that expects an autonomous patient is not well suited to cater to the needs of those who are not in a position to meet those expectations. This contention will be explored in the context of long-term care and the care of persons with mental disabilities.

Barbara Koenig, PhD is Professor of Medical Anthropology and Bioethics at the University of California, San Francisco. Her primary appointments are in the Department of Social and Behavioral Sciences and the Institute of Health & Aging, with a secondary appointment in the Department of Anthropology, History, and Social Medicine. Dr. Koenig has pioneered the use of empirical social science methods in the study of ethical questions in science, medicine, and health. Recent sample publications include: “The experience of addiction as told by the addicted: incorporating biological understandings into self-story” (with Rachel R. Hammer et al). Cult Med Psychiatry 2012; 36(4): 712-34; “Return of individual research results from genome-wide association studies: experience of the Electronic Medical Records and Genomics (eMERGE) Network” (with Stephanie M. Fullerton et al). Genet Med. 2012; 14(4): 424-31; “Ironic technology: Old age and the implantable cardioverter defibrillator in US health care” (with Sharon R. Kaufman, Paul S. Mueller, Abigale L. Ottenberg). Soc Sci Med 2011; 72(1):6-14; “Ethnographic Methods” (with Patricia A. Marshall) in Methods in Medical Ethics Second Edition. Jeremy Sugarman and Daniel P. Sulmasy, Eds. (Georgetown University Press 2010): 215-232.

Genomic justice in the marketplace. Clinical and public health interventions based on novel genomic technologies have the potential to improve health and reduce disparities. Can that promise be realized in the current health care environment? This paper reflects on three decades of work by an anthropologist working in the inter-disciplinary space of bioethics. That work ranges from running a clinical trial of direct-to-consumer genomic products offered in a preventive health clinic to interrogating concepts of “race” in the creation of genomic biobanks that support research into health inequity. The paper begins with a discussion of “disciplinary tensions” in the fields that inform ethical and policy analysis – or bioethics as broadly defined. Discussing these tensions reveals how our gaze shifts effortlessly away from attention to the political economy that undergirds translation of genomic technologies into health. As the marketplace intrudes the focus shifts to saleable products and brand management, seemingly in line with American core values of individual choice and control. I ask: how do market logics play a role in bringing genomics into the health care arena? Will those logics prove to be a barrier in using genetics to improve health and reduce disparities across populations?

Carolyn Rouse, PhD is Professor of Anthropology at Princeton University. Her research examines why people accept systems of inequality, and ethnographically details the discourses and practices that are used to rationalize forms of suffering as well as to negate them. In biomedicine, she has shown how scientific authority and operationalized treatment protocols are used to delegitimate suffering and to redirect health care resources. Rouse is the author of two books, Engaged Surrender: African American Women and Islam (University of California Press 2004) and Uncertain Suffering: Racial Health Care Disparities and Sickle Cell Disease (University of California Press 2009). Other recent sample publications include: “Eye of the Storm.” Anthropology Now 2009; 1(3): 64-69; “Patient and Practitioner Noncompliance: Rationing, Resistance, and the Missing Conversation.” Anthropology and Medicine 2010; 17(2): 187-200 “Jesica Speaks?: Adolescent Consent for Transplantation and Ethical Uncertainty.” In Keith Wailoo, Julie Livingston and Peter Guarnaccia, eds. Beyond the Bungled Transplant: Jesica Santillan and High-Tech Medicine in Cultural Perspective (University of North Carolina Press 2006): 329-348.

Racial Health Disparities and Questions of Evidence: What Went Wrong with Health People 2010. In 1979, the United States Department of Health and Human Services began an initiative known as Healthy People. Essentially an institution-led crusade, Healthy People was designed to focus nationally funded health research and care on achieving a set of nationwide goals. Every ten years the goals of the initiative are redrafted by policy leaders. The overarching goals of Healthy People 2000, for example, included the reduction of health disparities while the 2010 goals included the elimination of racial and ethnic health disparities. The 2020 goals, in contrast, included the achievement of health equity. Notably race and ethnic health disparities are no longer the primary target, even though they still exist and continue to be included in the United States data.

Jennifer Prah Ruger, PhD, MSL, MSc is Associate Professor of Medical Ethics and Health Policy at the University of Pennsylvania School of Medicine. Dr. Ruger has published work on the ethics and economics of health policy and public health, including equity and efficiency of health system access, financing, resource allocation, policy reform and the social determinants of health. She is currently a member of the Institute of Medicine’s Board on Global Health and she served previously on the Ethics Subcommittee of the Advisory Committee to the Director at the U.S. Centers for Disease Control and Prevention (CDC) and the Institute of Medicine’s Committee to Evaluate The U.S. President’s Emergency Plan for AIDS Relief (PEPFAR). Dr. Ruger is the author of Health and Social Justice (OUP, 2009), developing a theory of justice and health, the health capability paradigm. She was awarded a Guggenheim Fellowship to complete her forthcoming book, Global Health Justice and Governance (OUP, in press), which advances a theory of global health justice and governance called provincial globalism.

Global health inequalities and justice. In Afghanistan’s remote Wakhan Valley, Kyrgyz nomads lead a precarious and profoundly isolated life. They are four days travel from the nearest basic hospital. In the Wakhan doctors and clinics are lacking, even non-existent. Kyrgyz children die at what is perhaps the world’s highest rate. Young women are up to 1000 times more likely to die in childbirth than those in some developed nations. Parents in Mali live in dread of malaria, where approximately one in five children dies of the disease before age five. Indeed, every man, woman and child in this western African nation of about 16 million is at risk of contracting malaria and its attendant neurological and respiratory complications. The national health information system reported 2.1 million clinical cases in 2012, a quarter of them severe. Mali’s climate, so congenial to the Anopheles mosquitoes that carry malaria, is partly to blame; but in Ecuador, a country whose climate is also conducive to malaria, the rate of infection is vanishingly low, and the disease no longer regularly claims lives. And consider the United States, with its own dramatic health inequalities: in Albany Park in northwest Chicago, the average infant mortality rate between 2004 and 2009 was 4.9 percent; but less than 10 miles down N. Pulaski Road, in impoverished West Garfield Park, babies are nearly four times as likely to die, with an infant mortality rate of 19 percent. These and countless other examples illustrate the grim reality: the burden of disease and ill health falls with harsh inequality upon the world’s peoples. That this reality is well-known, widely covered in the press and thoroughly studied by scholars makes it no less unjust. Interest in global health inequalities is growing substantially. However, a lack of knowledge grounded in ethical reasoning hampers global policy formulation to close the gap. Are global health inequalities morally troubling? Why? If we want to reduce them, how should they be measured? What priority should disadvantaged groups receive? Which national and international actors are responsible? An ethical grounding would better enable the international community, including the World Health Organization and the World Bank, to devise policies and interventions to address this moral imperative. A world divided by health inequalities poses ethical challenges for global health.

Janet Shim, PhD is Associate Professor in the Institute for Health & Aging, at University of California, San Francisco. Her research lies at the intersections of the sociology of health and illness, science/technology/medicine, and social inequality. She is interested in tracing the relationships between conceptions of risk and difference, the organization of biomedical science and clinical practice, and broader social and cultural trends. Research foci include health inequalities, expert and lay knowledge of disease causation, and knowledge production in biomedicine, public health, and population sciences. Currently, she is conducting qualitative studies of the use of race and ethnicity in gene-environment interaction research on complex diseases, and the role of cultural capital in health care interactions. Selected publications include: Embodied Inequality: Heart Disease and the Politics of Causation (New York University Press, forthcoming); “Cultural health capital: A theoretical approach to understanding health care interactions and the dynamics of unequal treatment.” Journal of Health and Social Behavior 2010; 51(1): 1-15; “Constructing ‘race’ across the science-lay divide: Racial formation in the epidemiology and experience of cardiovascular disease.” Social Studies of Science 2005; 35(3): 405-436.

Cultural health capital: A sociological intervention into patient-centered and evidence-based care. In 2010, the landmark Patient Protection and Affordable Care Act, or the ACA, promulgated a number of fundamental changes to our nation’s health care system. While the lion’s share of attention and debate was rightly placed on its provisions to expand access to insurance and to care, less visible—and much less controversial—aspects of the ACA include the following: the creation of the National Institute on Minority Health and Health Disparities (NIMHD) as part of the National Institutes of Health; the establishment of a Patient-Centered Outcomes Research Institute (PCORI) to compare the clinical effectiveness of medical treatments; the development of a national quality improvement (QI) strategy to improve the delivery of health care services and population health; and the establishment of a Community-based Collaborative Care Network Program (CCN) to support consortia of health care providers to coordinate and integrate services for low-income uninsured and underinsured populations. Into this veritable alphabet soup, I introduce another acronym—CHC, or cultural health capital. In this paper, I position CHC as a sociological intervention or cautionary tale as we embark upon these changes aimed at making health care more patient-centered and evidence-based, particularly for populations historically underserved by existing systems. In particular, I use CHC to argue three points. First, CHC enables us to interrogate the definitions of “patient-centered care” and “evidence-based practice” that are increasingly being institutionalized, and to problematize their growing conflation. Second, CHC provides a theoretical basis and empirical agenda through which we can complicate the notion that a focus on patient-centered and evidence-based medicine will lead to the reduction of health disparities. Finally, CHC refocuses our attention on the processes—and not just the outcomes or organizations—that need to be in place in order for quality care to reach those who need it most.

The 2013 Merrimon Lecture
& Health Justice Conference
were co-sponsored by the

Center for Bioethics
School of Medicine Merrimon Lectureship
College of Arts and Sciences
Institute for Arts and Humanities
Moral Economies of Medicine Working Group
Department of Anthropology
Department of Social Medicine
Center for Health Equity Research
Department of Philosophy
Parr Center for Ethics

at the
University of North Carolina at Chapel Hill