Calls are increasing for American health care to be organized as a learning health care system, defined by the Institute of Medicine as a health care system “in which knowledge generation is so embedded into the core of the practice of medicine that it is a natural outgrowth and product of the healthcare delivery process and leads to continual improvement in care.” We applaud this conception, and in this paper, we put forward a new ethics framework for it. No such (...) framework has previously been articulated. The goals of our framework are twofold: to support the transformation to a learning health care system and to help ensure that learning activities carried out within such a system are conducted in an ethically acceptable fashion. (shrink)

Calls are increasing for American health care to be organized as a learning health care system, defined by the Institute of Medicine as a health care system “in which knowledge generation is so embedded into the core of the practice of medicine that it is a natural outgrowth and product of the healthcare delivery process and leads to continual improvement in care.” We applaud this conception, and in this paper, we put forward a new ethics framework for it. No such (...) framework has previously been articulated. The goals of our framework are twofold: to support the transformation to a learning health care system and to help ensure that learning activities carried out within such a system are conducted in an ethically acceptable fashion. (shrink)

It is widely assumed that informing prospective subjects about the risks and possible benefits of research not only protects their rights as autonomous decisionmakers, but also empowers them to protect their own interests. Yet interviews with patient‐subjects conducted under the auspices of the Advisory Committee on Human Radiation Experiments suggest this is not always the case. Patient‐subjects often trust their physician to guide them through decisions on research participation. Clinicians, investigators, and IRBs must assure that such trust is not misplaced.

In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. At the same time, the volume of biomedical research conducted in this country continues (...) to grow. The budget of the National Institutes of Health, for example, was $20,298 million in 2001, having more than doubled from a budget of $9,218 million 10 years before. This growing body of research includes increased efforts to use stored medical records as a source of data for health services, epidemiologic, and clinical studies. (shrink)

In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. At the same time, the volume of biomedical research conducted in this country continues (...) to grow. The budget of the National Institutes of Health, for example, was $20,298 million in 2001, having more than doubled from a budget of $9,218 million 10 years before. This growing body of research includes increased efforts to use stored medical records as a source of data for health services, epidemiologic, and clinical studies. (shrink)

Response to Emily A. Largent, Franklin G. Miller and Steven Joffe, A Prescription for Ethical Learning, Hastings Center Report, 43, s1, (S28-S29), (2013).

The study of landscape and place has become an increasingly fertile realm of inquiry in the humanities and social sciences. In this new book of essays, selected from presentations at the first annual meeting of the Society for Philosophy and Geography, scholars investigate the experiences and meanings that inscribe urban and suburban landscapes. Gary Backhaus and John Murungi bring philosophy and geography into a dialogue with a host of other disciplines to explore a fundamental dialectic: while our collective and personal (...) activity modifies the landscape, in turn, the landscape modifies human identities, and social and environmental relations. Whether proposing a peripatetic politics, conducting a sociological analysis of building security systems, or critically examining the formation of New York City's municipal parks, each essay sheds distinctive light on this fascinating and engaging aspect of contemporary environmental studies. (shrink)

Aim: Streamlining consent for low-risk comparative effectiveness research (CER) could facilitate research, while safeguarding patients' rights. Materials & methods: 2618 adults were randomized to one of seven consent approaches (six streamlined and one traditional) for a hypothetical, low-risk CER study. A survey measured understanding, voluntariness, and feelings of respect. Results: Participants in all arms had a high understanding of the trial and positive attitudes toward the consent interaction. Highest satisfaction was with a streamlined approach showing a video before the medical (...) appointment. Participants in streamlined were more likely to mistakenly think a signature was required. Conclusion: Streamlined consent was no less acceptable than traditional, signed consent. Streamlined and traditional approaches achieved similar levels of understanding, voluntariness and a feeling that the doctor–patient interaction was respectful. (shrink)

Hastings Center Report, Volume 52, Issue 3, Page 29-31, May–June 2022.

Public health ethics, like the field of public health it addresses, traditionally has focused more on practice and particular cases than on theory, with the result that some concepts, methods, and boundaries remain largely undefined. This paper attempts to provide a rough conceptual map of the terrain of public health ethics. We begin by briefly defining public health and identifying general features of the field that are particularly relevant for a discussion of public health ethics.Public health is primarily concerned with (...) the health of the entire population, rather than the health of individuals. Its features include an emphasis on the promotion of health and the prevention of disease and disability; the collection and use of epidemiological data, population surveillance, and other forms of empirical quantitative assessment; a recognition of the multidimensional nature of the determinants of health; and a focus on the complex interactions of many factors—biological, behavioral, social, and environmental—in developing effective interventions. (shrink)

Recent legislation, such as the Patient Self-Determination Act, establishes advance directives as an acceptable procedural means of incorporating patients’ preferences for life-sustaining treatments into their medical care. Advance directives can enhance medical decision making since they provide patients with an opportunity to communicate their preferences before suffering from an acute illness that may preclude their ability to do so.Although patients expect discussions about life-sustaining therapies to be initiated by their physicians, very little is known about what prompts physicians to discuss (...) advance directives with their patients. As in other areas of clinical decision making, there is evidence that patients’ sociodemographic factors influence whether discussions about advance directives occur between patients and their physicians. In one study of persons with the acquired immunodeficiency syndrome, those who had not had discussions about advance directives with their physicians tended to be non-white, have no prior hospitalization, and were more likely to have been cared for in a health maintenance organization than in a teaching hospital. (shrink)

Recent legislation, such as the Patient Self-Determination Act, establishes advance directives as an acceptable procedural means of incorporating patients’ preferences for life-sustaining treatments into their medical care. Advance directives can enhance medical decision making since they provide patients with an opportunity to communicate their preferences before suffering from an acute illness that may preclude their ability to do so.Although patients expect discussions about life-sustaining therapies to be initiated by their physicians, very little is known about what prompts physicians to discuss (...) advance directives with their patients. As in other areas of clinical decision making, there is evidence that patients’ sociodemographic factors influence whether discussions about advance directives occur between patients and their physicians. In one study of persons with the acquired immunodeficiency syndrome, those who had not had discussions about advance directives with their physicians tended to be non-white, have no prior hospitalization, and were more likely to have been cared for in a health maintenance organization than in a teaching hospital. (shrink)

As interest in comparative effectiveness research grows, questions have emerged regarding whether it is ever acceptable to alter informed consent requirements for research when patients are randomly assigned to widely-used therapies. This paper reports on interviews with Institutional Review Board members and researchers and on focus groups with patients from Geisinger and Johns Hopkins health systems. The objective was to elicit participants' views of the acceptability of four different disclosure and authorization models for low-risk pragmatic comparative effectiveness trials of widely-used (...) therapies. Results suggest that although participants valued autonomous choice, many also believed that it was acceptable to streamline information disclosure and to use an opt-out process for eligible individuals who would prefer not to participate. This provides some preliminary evidence that relevant stakeholders find alternatives to traditional informed consent acceptable for low-risk pragmatic comparative effectiveness trials of widely-used therapies as long as a sufficient amount of choice is preserved. (shrink)

As concerns about the negative health effects of unhealthy eating, overweight and obesity have increased, so too have policy efforts to promote healthy eating. Federal, state, and local governments have proposed and implemented a variety of healthy eating policies. Many of these policies are controversial, facing objections that range from the practical (e.g., the policy won’t succeed at improving people’s diets) to the ethical (e.g., the policy is paternalistic or inequitable). Especially controversial have been policies limiting the options offered in (...) the marketplace, limiting access to certain options, or providing disincentives for the purchase of certain options. Examples of such policies include proposed .. (shrink)

Strengthening the abilities of smallholder farmers in developing countries, particularly women farmers, to produce for both home and the market is currently a development priority. In many contexts, ownership of assets is strongly gendered, reflecting existing gender norms and limiting women’s ability to invest in more profitable livelihood strategies such as market-oriented agriculture. Yet the intersection between women’s asset endowments and their ability to participate in and benefit from agricultural interventions receives minimal attention. This paper explores changes in gender relations (...) and women’s assets in four agricultural interventions that promoted high value agriculture with different degrees of market-orientation. Findings suggest that these dairy and horticulture projects can successfully involve women and increase production, income and the stock of household assets. In some cases, women were able to increase their control over production, income and assets; however in most cases men’s incomes increased more than women’s and the gender-asset gap did not decrease. Gender- and asset-based barriers to participation in projects as well as gender norms that limit women’s ability to accumulate and retain control over assets both contributed to the results. Comparing experiences across the four projects, especially where projects implemented adaptive measures to encourage gender-equitable outcomes, provides lessons for gender-responsive projects targeting existing and emerging value chains for high value products. Other targeted support to women farmers may also be needed to promote their acquisition of the physical assets required to expand production or enter other nodes of the value chain. (shrink)

This book provides practical and research-based chapters that offer greater clarity about the particular kinds of teacher reflection that matter and avoids talking about teacher reflection generically, which implies that all kinds of reflection are of equal value.

Pragmatic clinical trials (PCTs) serve an important function in the modern research landscape: studying interventions in an environment that reflects real-world conditions, rather than the relative...

In _Feminist Interpretations of John Rawls_, Ruth Abbey collects eight essays responding to the work of John Rawls from a feminist perspective. An impressive introduction by the editor provides a chronological overview of English-language feminist engagements with Rawls from his Theory of Justice onwards. She surveys the range of issues canvassed by feminist readers of Rawls, as well as critics’ wide disagreement about the value of Rawls’s corpus for feminist purposes. The eight essays that follow testify to the continuing (...) ambivalence among feminist readers of Rawls. From the perspectives of political theory and moral, social, and political philosophy, the essayists address particular aspects of Rawls’s work and apply it to a variety of worldly practices relating to gender inequality and the family, to the construction of disability, to justice in everyday relationships, and to human rights on an international level. The overall effect is to give a sense of the broad spectrum of possible feminist critical responses to Rawls, ranging from rejection to adoption. Aside from the editor, the contributors are Amy R. Baehr, Eileen Hunt Botting, Elizabeth Brake, Clare Chambers, Nancy J. Hirschmann, Anthony Simon Laden, Janice Richardson, and Lisa H. Schwartzman. (shrink)

“There is no longer any world,” wrote the late philosopher Jean-Luc Nancy in 1993, and in this paper, the sense of this loss of world is analysed in terms of the modal notions of necessity, impossibility, and possibility. Modal differentiation can illuminate what constitutes the sense of actuality in a world, and hence, what it is that has been lost regarding this actuality of being in a world. Modal thinking does not rely on knowledge of the true state of (...) affairs, nor on having a constant grasp on necessity: modal thinking enables us to discern the actual by way of the relations between necessity, possibility, and impossibility. It is on the basis of these relations that a mode of rethinking actuality is suggested. In order to pursue this line of thought, I rely on Jacques Lacan’s understanding of modalities as writing operations, concentrating mostly on certain sections from his Seminar XXI, wherein he refers to Aristotelian modal logic and mentions the analytic philosopher Jaakko Hintikka. This ternary relation between Aristotle, Hintikka, and Lacan suggests a different outlook on the actual being-such of a world. The being-such of a world, its actuality, is understood as a contingency, a possibility emerging from the relation between what is declared necessary and what is impossible. The paper shows the implications of such a modal understanding of actuality, as demonstrated in Lacan’s view of human sexuality and sexual difference. (shrink)

RÉSUMÉLe goût, en tant que faculté d'appréciation esthétique, implique un individu, et pourtant suppose une communauté. Dans cet article, nous constatons qu'une disposition singulière à l’égard des objets de goût est conditionnée par le consentement d'autrui et par l’être-avec autrui. De cette façon, une communauté esthétique est établie. Cette idée de communauté esthétique remonte au sensus communis de Kant et à la notion de préservation de Heidegger : dans les deux cas, c'est la présence d'une communauté qui conditionne l'expérience esthétique.

The papers by Nancy Kass, Ruth Faden, and colleagues describe an ethical imperative to study clinical care as it is being delivered. The goal of learning from each patient is attractive, but integrating research and clinical practice is not easy. The authors suggest that the bioethical framework in use for the past forty years to oversee clinical research may be as much an impediment to the development of a learning health care system as a means of protecting the (...) interests of patients. This framework draws a bright line between clinical research and clinical care activities, subjecting clinical research to institutional review and ongoing oversight while assuming that clinical care is conducted primarily in the interests of patients and not in need of additional ethical oversight. The authors identify five characteristics that have been used to distinguish the two activities, and they conclude that none succeed. The practical implications of this conclusion are left unspecified, however. Should ethical oversight simply be eliminated for these kinds of research activities on the grounds that oversight is not mandated for clinical care and the two cannot be distinguished? (shrink)

A leading scholar in the psychology of thinking and reasoning argues that the counterfactual imagination—the creation of "if only" alternatives to ...

Written by one of today's most creative and innovative philosophers, Ruth Garrett Millikan, this book examines basic empirical concepts; how they are acquired, how they function, and how they have been misrepresented in the traditional philosophical literature. Millikan places cognitive psychology in an evolutionary context where human cognition is assumed to be an outgrowth of primitive forms of mentality, and assumed to have 'functions' in the biological sense. Of particular interest are her discussions of the nature of abilities as (...) different from dispositions, her detailed analysis of the psychological act of reidentifying substances, and her critique of the language of thought for mental representation. In a radical departure from current philosophical and psychological theories of concepts, this book provides the first in-depth discussion on the psychological act of reidentification. (shrink)

Unruly Practices brings together a series of widely discussed essays in feminism and social theory. Read together, they constitute a sustained critical encounter with leading European and American approaches to social theory. In addition, Nancy Fraser develops a new and original socialist-feminist critical theory that overcomes many of the limitations of current alternatives. First, in a series of critical essays, she deploys philosophical and literary techniques to assess the work of Michael Foucault, the French deconstructionists, Richard Rorty, and Jürgen (...) Habermas. Then, in a group of constructive essays, she incorporates their respective strengths in a new critical theory of late-capitalist political culture. Fraser breaks new ground methodologically by integrating the previously divergent insights of poststructuralism, critical social theory, feminist theory, and pragmatism. Thematically, she deals with varied forms of dominance and subordination in modern, industrial, late-capitalist societies. These themes are integrated in an original theory of 'the politics of need interpretation.' This concept becomes the linchpin of the socialist-feminist critical theory. (shrink)

Targeting injustices that cut across borders, they are making the scale of justice an object of explicit struggle.Inspired by these efforts, Nancy Fraser asks: ...

How the new conspiracists are undermining democracy—and what can be done about it Conspiracy theories are as old as politics. But conspiracists today have introduced something new—conspiracy without theory. And the new conspiracism has moved from the fringes to the heart of government with the election of Donald Trump. In A Lot of People Are Saying, Russell Muirhead and Nancy Rosenblum show how the new conspiracism differs from classic conspiracy theory, how it undermines democracy, and what needs to be (...) done to resist it. (shrink)

What does it mean to think critically about politics at a time when inequality is increasing worldwide, when struggles for the recognition of difference are eclipsing struggles for social equality, and when we lack any credible vision of an alternative to the present order? Philosopher Nancy Fraser claims that the key is to overcome the false oppositions of "postsocialist" commonsense. Refuting the view that we must choose between "the politics of recognition" and the "politics of redistribution," Fraser argues for (...) an integrative approach that encompasses the best aspects of both. (shrink)

How the new conspiracists are undermining democracy—and what can be done about it Conspiracy theories are as old as politics. But conspiracists today have introduced something new—conspiracy without theory. And the new conspiracism has moved from the fringes to the heart of government with the election of Donald Trump. In A Lot of People Are Saying, Russell Muirhead and Nancy Rosenblum show how the new conspiracism differs from classic conspiracy theory, why so few officials speak truth to conspiracy, and (...) what needs to be done to resist it. Classic conspiracy theory insists that things are not what they seem and gathers evidence—especially facts ominously withheld by official sources—to tease out secret machinations. The new conspiracism is different. There is no demand for evidence, no dots revealed to form a pattern, no close examination of shadowy plotters. Dispensing with the burden of explanation, the new conspiracism imposes its own reality through repetition and bare assertion. The new conspiracism targets democratic foundations—political parties and knowledge-producing institutions. It makes it more difficult to argue, persuade, negotiate, compromise, and even to disagree. Ultimately, it delegitimates democracy. Filled with vivid examples, A Lot of People Are Saying diagnoses a defining and disorienting feature of today's politics and offers a guide to responding to the threat. (shrink)

Questioning the usual judgements of political ethics, Ruth W. Grant argues that hypocrisy can actually be constructive while strictly principled behavior can be destructive. _Hypocrisy and Integrity_ offers a new conceptual framework that clarifies the differences between idealism and fanaticism while it uncovers the moral limits of compromise. "Exciting and provocative.... Grant's work is to be highly recommended, offering a fresh reading of Rousseau and Machiavelli as well as presenting a penetrating analysis of hypocrisy and integrity."—Ronald J. Terchek, _American (...) Political Science Review_ "A great refreshment.... With liberalism's best interests at heart, Grant seeks to make available a better understanding of the limits of reason in politics."—Peter Berkowitz, _New Republic_. (shrink)

This essay aims to clarify the value of developing systematic studies of ignorance as a component of any robust theory of knowledge. The author employs feminist efforts to recover and create knowledge of women's bodies in the contemporary women's health movement as a case study for cataloging different types of ignorance and shedding light on the nature of their production. She also helps us understand the ways resistance movements can be a helpful site for understanding how to identify, critique, and (...) transform ignorance. (shrink)

Readers of this book are sure to view the ethics of incentives in a new light.

Lay understanding and scientific accounts of female sexuality and orgasm provide a fertile site for demonstrating the importance of including epistemologies of ignorance within feminist epistemologies. Ignorance is not a simple lack. It is often constructed, maintained, and disseminated and is linked to issues of cognitive authority, doubt, trust, silencing, and uncertainty. Studying both feminist and nonfeminist understandings of female orgasm reveals practices that suppress or erase bodies of knowledge concerning women's sexual pleasures.

: Lay understanding and scientific accounts of female sexuality and orgasm provide a fertile site for demonstrating the importance of including epistemologies of ignorance within feminist epistemologies. Ignorance is not a simple lack. It is often constructed, maintained, and disseminated and is linked to issues of cognitive authority, doubt, trust, silencing, and uncertainty. Studying both feminist and nonfeminist understandings of female orgasm reveals practices that suppress or erase bodies of knowledge concerning women's sexual pleasures.

Epistemic trustworthiness is defined as a complex character state that supervenes on a relation between first- and second-order beliefs, including beliefs about others as epistemic agents. In contexts shaped by unjust power relations, its second-order components create a mutually supporting link between a deficiency in epistemic character and unjust epistemic exclusion on the basis of group membership. In this way, a deficiency in the virtue of epistemic trustworthiness plays into social/epistemic interactions that perpetuate social injustice. Overcoming that deficiency and, along (...) with it, normalized practices of epistemic exclusion, requires developing a self-critical perspective on the partial, socially-located character of one's perspective and the consequent epistemic value of inclusiveness. (shrink)

In this paper I adduce a new argument in support of the claim that IBE is an autonomous form of inference, based on a familiar, yet surprisingly, under-discussed, problem for Hume’s theory of induction. I then use some insights thereby gleaned to argue for the claim that induction is really IBE, and draw some normative conclusions.

: This essay aims to clarify the value of developing systematic studies of ignorance as a component of any robust theory of knowledge. The author employs feminist efforts to recover and create knowledge of women's bodies in the contemporary women's health movement as a case study for cataloging different types of ignorance and shedding light on the nature of their production. She also helps us understand the ways resistance movements can be a helpful site for understanding how to identify, critique, (...) and transform ignorance. (shrink)

I defend the suggestion that the rational probability in the Sleeping Beauty paradox is one third. The reasoning in its favour is familiar: for every heads-waking, there are two tails-wakings. To complete the defense, I rebut the reasoning which purports to justify the competing suggestion – that the correct probability is half – by undermining its premise, that no new information has been received.