Madison Powers

Inequalities in health, inequalities in health care: four generations of discussion about justice and cost-effectiveness analysis.

The focus of questions of justice in health policy has shifted during the last 20 years, beginning with questions about rights to health care, and then, by the late 1980s, turning to issues of rationing. More recently, attention has focused on alternatives to cost-effectiveness analysis. In addition, health inequalities, and not just inequalities in access to health care, have become the subject of moral analysis. This article examines how such trends have transformed the philosophical landscape and encouraged some in bioethics to seek guidance on normative questions from outside of the contours of traditional philosophical arguments about justice.

An Institutional Review Board dilemma: responsible for safety monitoring but not in control

Clinical trials have become a major research tool to evaluate new medical interventions. Most trials require some level of data monitoring for quality control and many trials require special monitoring for participant safety. For national multicenter trials, independent data monitoring committees have become the standard for monitoring for evidence of participant benefit or harm in trials with irreversible outcomes such as death or serious morbidity. The Institutional Review Board (IRB) is held responsible for monitoring local trials. Often local institutions do not have an infrastructure in place to meet this responsibility, and therefore local IRBs cannot fulfill this obligation. In addition, IRBs are currently inundated with individual safety reports from local and multi-institutional trials which may appear to provide some level of safety monitoring, but in fact gives a false sense of security. We propose the establishment of institutional data monitoring committees and appropriate informatics infrastructure to monitor local trials.

Health inequities and social justice. The moral foundations of public health.

Recently we argued that social justice is concerned with human well-being, which is best understood as involving plural, irreducible dimensions, each of which represents something of independent moral significance. Health is one of these distinct dimensions of well-being, as is personal security, the development and exercise of cognitive capacities for reasoning, living under conditions of social respect, developing and sustaining deep personal attachments, and being able to lead self-determining lives. In this paper, we address why considerations of justice, and not utilitarian aims as applied narrowly to health outcomes, are most foundational to public health. In particular, we argue that the aspiration for improvement of the health of populations defines the positive aim of justice in public health, along with the negative aim of reducing or combating systematic disadvantage that affects adversely historically situated social groups and, more generally, children across the normal life span when their well-being is not assigned a special priority in the development of public health policies.ZusammenfassungVor kurzem haben wir ausführlich dargelegt, dass soziale Gerechtigkeit sich mit menschlichem Wohlergehen befasst. Wohlergehen umfasst einige, nicht reduzierbare Dimensionen, von denen jede etwas von unabhängiger moralischer Bedeutung darstellt. Gesundheit ist eine dieser verschiedenen Dimensionen des Wohlergehens, wie auch persönliche Sicherheit, die Entwicklung und das Training kognitiver Urteilsfähigkeiten, Leben unter den Bedingungen sozialer Beziehungen, Entwicklung und Erhalt persönlicher Bindungen und die Fähigkeit, ein selbstbestimmtes Leben zu führen. In dieser Arbeit befassen wir uns damit, warum Gerechtigkeitserwägungen und nicht utilitaristische Ziele, wie sie sehr eng gefasst auf die Ergebnisse gesundheitlicher Parameter angewandt werden können, grundlegend für Public Health und das öffentliche Gesundheitswesen sind. Insbesondere argumentieren wir, dass das Streben nach Verbesserung der Gesundheit der Bevölkerung das positive Ziel der Gerechtigkeit in Public Health definiert, komplementär zu dem negativen Ziel, eine systematische Benachteiligung zu vermindern oder zu bekämpfen, die schlecht gestellte soziale Gruppen betrifft. Dies schließt generell auch Kinder und ihre normale Lebensspanne mit ein, wenn ihrem Wohlergehen nicht besondere Priorität bei der Entwicklung politischer Strategien für das öffentliche Gesundheitswesen zugewiesen wird.

Health inequities and social justice

Recently we argued that social justice is concerned with human well-being, which is best understood as involving plural, irreducible dimensions, each of which represents something of independent moral significance. Health is one of these distinct dimensions of well-being, as is personal security, the development and exercise of cognitive capacities for reasoning, living under conditions of social respect, developing and sustaining deep personal attachments, and being able to lead self-determining lives. In this paper, we address why considerations of justice, and not utilitarian aims as applied narrowly to health outcomes, are most foundational to public health. In particular, we argue that the aspiration for improvement of the health of populations defines the positive aim of justice in public health, along with the negative aim of reducing or combating systematic disadvantage that affects adversely historically situated social groups and, more generally, children across the normal life span when their well-being is not assigned a special priority in the development of public health policies.ZusammenfassungVor kurzem haben wir ausführlich dargelegt, dass soziale Gerechtigkeit sich mit menschlichem Wohlergehen befasst. Wohlergehen umfasst einige, nicht reduzierbare Dimensionen, von denen jede etwas von unabhängiger moralischer Bedeutung darstellt. Gesundheit ist eine dieser verschiedenen Dimensionen des Wohlergehens, wie auch persönliche Sicherheit, die Entwicklung und das Training kognitiver Urteilsfähigkeiten, Leben unter den Bedingungen sozialer Beziehungen, Entwicklung und Erhalt persönlicher Bindungen und die Fähigkeit, ein selbstbestimmtes Leben zu führen. In dieser Arbeit befassen wir uns damit, warum Gerechtigkeitserwägungen und nicht utilitaristische Ziele, wie sie sehr eng gefasst auf die Ergebnisse gesundheitlicher Parameter angewandt werden können, grundlegend für Public Health und das öffentliche Gesundheitswesen sind. Insbesondere argumentieren wir, dass das Streben nach Verbesserung der Gesundheit der Bevölkerung das positive Ziel der Gerechtigkeit in Public Health definiert, komplementär zu dem negativen Ziel, eine systematische Benachteiligung zu vermindern oder zu bekämpfen, die schlecht gestellte soziale Gruppen betrifft. Dies schließt generell auch Kinder und ihre normale Lebensspanne mit ein, wenn ihrem Wohlergehen nicht besondere Priorität bei der Entwicklung politischer Strategien für das öffentliche Gesundheitswesen zugewiesen wird.

A Social Justice Framework for Health and Science Policy

The goal of this article is to explore how a social justice framework can help illuminate the role that consent should play in health and science policy. In the first section, we set the stage for our inquiry with the important case of Henrietta Lacks. Without her knowledge or consent, or that of her family, Mrs. Lacks’s cells gave rise to an enormous advance in biomedical science—the first immortal human cell line, or HeLa cells. In the second section, we provide a very brief sketch of the theory of social justice with which we operate, a theory that explicates the demands of justice in terms of six essential dimensions of well-being, of which health is one, as is self-determination, and that is centered around twin commitments to the promotion of a sufficient level of well-being and the moral importance of addressing concerns about systematic disadvantage. We also consider the relation of our theory to concepts like the common good or public interest. We then go on in the third section to address how our account of selfdetermination, particularly as it relates to insights from J. S. Mill, provides the theoretical backdrop for an important question in the ethics of health and science policy—whether some liberties matter more and why. Our core theoretical claim is that not all liberties and immunities from interference are on a moral par and thus that they do not all merit the same level of protection in public policy. We close in the fourth part by illustrating how our theoretical apparatus frames and helps resolve concrete challenges about consent and privacy in health and science policy, using an example from HIV testing as well as the Henrietta Lacks case.

Health Capabilities, Outcomes, and the Political Ends of Justice

Ruger’s (2010) approach to justice in health policy is built upon the capabilities accounts of justice developed most prominently by philosophers such as Martha Nussbaum and especially Amartya Sen. Her approach thus inherits many of the most persuasive and most contested features of the theories on which she relies. We approach Ruger’s work as sympathetic critics. Ours is also at its core a teleological theory, broadly Aristotelian in its roots, in so far as it frames the aim of justice in relation to an underlying conception of human well-being (Powers and Faden, 2006). Our theory, as well as hers, begins with the assumption that health matters to justice in and of itself, and not merely indirectly; for example, through the instrumental role that health plays in achieving fair equality of opportunity. Unlike Ruger, however, we do not endorse capabilities as the preferred metric for use by teleological theories of justice. Also unlike Ruger, our theory operates with a pluralist conception of the irreducible, core elements of well-being that, taken together, identify the demands of justice in any sphere of public policy and the design of its implementing institutions. This pluralist conception is something we share with other teleological theories, but from which Ruger appears to depart. Instead, her deliberate emphasis is upon the single focal value of health, and in particular, an account of what she calls the ‘central health capabilities.’ In this essay, we take on some of the main lines of argument that Ruger and her intellectual predecessors employ in the defense of capabilities as the appropriate metric of a teleological conception of justice, drawing in part on the strengths of pluralistic teleological theory. We argue that the move to capabilities is not necessary for meeting certain types of objection to teleological accounts and that a wholesale displacement of outcomes is incongruent with the best justificatory arguments a teleological theorist has available. Finally, we argue that, specific to health, the capabilities metric is insufficient in a theory of justice concerned with health over the Journal of Human Development and Capabilities Vol. 12, No. 4, November 2011

Justice and the Market for Health Insurance

After reviewing some of the insurance-related obstacles to access to health care, some ethical criteria for evaluating proposals aimed at reforming the health insurance marketplace to achieve universal access are developed. The additional reforms needed to eliminate many of the deficiencies in the current health insurance marketplace are discussed. It is suggested that without such substantial reforms some of the other goals such as expanded consumer choice and overall societal health care cost savings may not be effectively promoted.

Some Reflections on Disability and Bioethics

advocates offers other beneats as well. Though bioethicists pay lip service to the importance of including community and public representatives in research decision making, many bioethicists assume that they are qualiaed to all this role. But as Kuczewski notes, professional bioethicists have become part of the medical establishment. With physicians and scientists as everyday colleagues, bioethicists cannot avoid being inouenced by the research culture. Meanwhile, because bioethicists spend relatively little time with patients and their families, few bioethicists have personal knowledge of how patients and families perceive and experience research. By contrast, patient advocates are immersed in the world of illness. Many are patients or close relatives of patients. Virtually all can easily consult patients and families about their positions on various research issues. Many advocates also have a relatively sophisticated scientiac understanding of the conditions that affect the patients they represent. Many are accustomed to the medical setting and to negotiating with health professionals about the care their constituents receive. Because of their knowledge and experience, they are more likely to be active participants in research deliberations than are the typical public members of institutional review boards and policy-making groups. More collaboration could beneat advocates as well. Besides the beneats Kuczewski cites, bioethicists could help advocates develop an ethics of patient advocacy. Patient advocates have gained substantial power in the research arena. Advocates exercise signiacant inouence over government research funding, federal research policy, and the conduct of speciac studies. But some advocacy actions and positions may be questioned on ethical grounds. For example, lobbying for more federal funding for research on speciac diseases can foster unfair distribution of limited research resources. Advocacy for expanded access to experimental interventions can have serious costs to constituents and future patients. Bioethicists have skills and resources to help advocates determine the most defensible course for their research activities. In sum, bioethicists should build bridges with a broad range of advocacy organizations. More dialogue could foster the development of ethics and policy from the bottom up. Advocates could all gaps in existing ethics analyses and regulations, call attention to unrecognized shortcomings in accepted approaches, and furnish personal insights frequently absent from ethics and policy deliberations. At the same time, bioethicists could help advocates meet their moral responsibilities to constituents and the broader society. Though the exchange could be heated and demanding, both advocacy and bioethics would be the stronger for it.1

Hypothetical Choice Approaches to Health Care Allocation

The application of hypothetical choice models to questions of health care allocation has become a staple both in philosophical and health policy literatures.1 However, they have been used to argue for almost every imaginable social policy. Norman Daniels has argued for a right to a decent minimum of health care,2 but Allan Gibbard has argued against a right to a decent minimum and for sometimes giving priority to enhancing the lives of the healthy.3 Daniels also has argued for distribution of health care to “protect individuals’ fair share of age-relative normal opportunity range for their society,” even though “pure age rationing” cannot be ruled out in all cases.4 The contributors to the Comparative Benefits Modeling Project have defended the allocation of health care according to principles of cost-utility analysis,5 whereas Albert Weale has argued for a variety of potentially divergent claims, such as the minimization of mortality and the maximization either of the average length of life or the number of lives saved.6 Robert Veatch has argued for a claim to a share of resources sufficient to provide persons with mental retardation with an opportunity for equality of outcome, although other ethical principles limit the scope of these demands.7 Margaret Battin has advocated policies for the direct termination of life at the onset of substantial morbidity,8 and Dan Brock has argued for devoting no resources to patients in persistent vegetative states, but against any one prudent policy with respect to the moderately demented.9 Others, including John Harris and Douglas McLean, have suggested that such models may show little or nothing.10

Who's in your genes?

In 1866, Gregor Mendel showed that pea plants inherit physical and other traits from their parents according to very precise laws of nature. In 1910, Thomas Hunt Morgan showed that genes exist on chromosomes, and in 1952 Martha Chase and Alfred Hershey showed that DNA within a gene carries traits from parent to child. When someone tells you, “It’s in your genes,” they’re saying that the part of your chromosome responsible for your quirk matches that part of the chromosome on your equally quirky parent.