Quill Rebecca Kukla

All five articles in this issue consider, in different ways, what it takes to respect an individual’s humanity; each one offers a broader conception of human regard than is standard in the practical ethics literature. Respectively, they explore how truth-telling, providing appropriate treatment for those with substance use disorders, enabling real reproductive choice and control, and providing meaningful access to the internet all form important parts of what it takes to treat people as fully human and to care for their well-being. All are grounded not just in abstract rights arguments, but in attention to the empirical and social conditions of...

In lieu of an abstract, here is a brief excerpt of the content:Editorial NoteRebecca Kukla, PhD, Editor in ChiefThis spring is an exciting time at the Kennedy Institute of Ethics Journal. We are rolling out our new series of online reviews of books in bioethics, practical ethics, and the ethical, social, and legal dimensions of science and medicine. These in-depth reviews will be written by leading figures in the discipline, and will be published in online issue supplements, with pre-publication versions available on our website or by e-mail subscription. We are very enthusiastic about this new initiative and hope that our reviews will become crucial tools and sources of inspiration for everyone interested in the field of bioethics, broadly construed. We hope that you will make use of and enjoy this new source of ethical conversation and information.Our spring issue represents our current attempt here at the journal to broaden the discipline’s conception of what counts as a bioethical issue.In our lead article, David DeGrazia brings the currently emotional debates over gun control policy within the purview of bioethics. Violence and policies concerning violent weapons are crucial health issues, and yet bioethicists have done little to bring their tools and insights to this domain. DeGrazia’s paper thus breaks new ground. He defends a moderate gun control policy, and argues that from the point of view of public health, it is morally inexcusable not to tighten gun regulations in the United States, regardless of which moral framework we employ.Our second two papers—“Resolving the Conflict: Some Clarifications of Vulnerability in Health Care” (by Anglea Martin, Nicholas Tavaglione, and Samia Hurst) and “Beneficence, Justice, and Health Care” (by J. Paul Kelleher)—both take rich philosophical concepts that usually find their home within research ethics and resituate them within the domain of patient care. Martin and her co-authors give a close analysis of the notion of vulnerability. They seek meaningful ways of identifying specific, morally pressing vulnerabilities among patients, given that all patients are to some extent vulnerable. Kelleher creatively revisits the much-discussed notion [End Page vii] of beneficence, arguing that duties of beneficence are sometimes grounded in justice-based duties. This pushes against the tradition of thinking of justice as a consideration that comes into play only at the population level.The final paper, Howard Brody’s “Chauncey Leake and the Development of Bioethics in America,” brings a new methodological approach to the journal. This is a historical paper examining the intellectual and social role that Leake played in the development of the discipline of bioethics. Leake’s advocacy for the integration of philosophy and medical expertise in bioethics became a hallmark of the field; yet Leake himself is mostly forgotten. Brody examines both his contribution and the reasons for his relative invisibility. This kind of intellectual history enriches and grounds ethical analysis in crucial ways, but it is too rarely integrated into bioethical conversations. [End Page viii]Rebecca Kukla, Editor in ChiefKennedy Institute of Ethics JournalCopyright © 2014 The Johns Hopkins University Press...

In lieu of an abstract, here is a brief excerpt of the content:Editorial NoteRebecca KuklaIn this issue, we feature a linked pair of papers that follow up on and develop problems raised in our September 2014 (24:3) special issue on obesity and the regulation of bodies. Matteo Bonotti and Michele Loi each contribute articles on food labeling and the right to ignorance. Focusing on British food labeling laws, both argue that—despite the common idea that being ‘informed’ is a precondition for autonomy—sometimes the right to avoid certain information can be an important component of flourishing autonomous agency. Labeling foods as ‘healthy’ or ‘unhealthy’ can inappropriately control how we interpret our food choices and how we experience certain foods, and it can take foods out of their proper context. In turn this can unduly interrupt important values and sources of pleasure. At the same time, having nutrition information available in an easily accessible and usable form can also be an important contributor to agency and health.Bonotti, in “Food Labels, Autonomy, and the Right (Not) to Know,” and Loi, in “Food Labels, Genetic Information, and the Right Not to Know,” explore these issues in detail. Bonotti asks what sorts of presentations of information about foods are most conducive to autonomy. Loi develops and defends Bonotti’s argument. She also argues against a common form of genetic exceptionalism, spelling out in detail an analogy between the right not to know certain nutrition information with the more widely recognized right not to know certain genetic information. Furthermore, she makes the important point that trying to control eating behavior through consumer labeling may well overestimate the role of voluntary individual choices as opposed to environmental and other pressures in determining this behavior. Loi’s point, here, fits in nicely with a larger point that is becoming more and more vivid lately: PSAs designed to shape individual choices are generally ineffective, and they often buttress an ideologically problematic and empirically inadequate metaphysics of choice. Both authors—like Barnhill et al. in the previous issue—emphasize that food is valuable, not just as nutrition, but as an [End Page vii] integral component of various social and cultural goods and personal pleasures. No account of the ethics of the regulation of eating is complete without this acknowledgment.In “Construction vs. Development: Polarizing Models of Human Gestation,” Robert Stith argues that much of the seemingly unresolvable debate over the ethics of the destruction of embryos (in the course of research or abortion) turns on both sides’ implicit commitments to competing models of human gestation. On the construction model, form and essence are gradually imposed, and there is no one objective point at which the thing under construction becomes that thing. On the development model, a thing is what it essentially is right from the start, even if its form will take time to develop. Stith argues that even people who agree that human life has dignity as such routinely make different starting assumptions about whether gestation is a constructive or developmental process; hence they come to different conclusions about whether the destruction of embryos is morally problematic. He defends the development view, even while acknowledging that both models can be intuitively gripping.Finally, in “Redundant, Secretive, and Isolated: When Are Clinical Trials Scientifically Valid?” Kirstin Borgerson gives an elegant and rigorous analysis of some of the epistemic and ethical shortcomings that result from our taking clinical trials as independent scientific events, and assessing their scientific and ethical value by looking at their internal methodology. Clinical trials are often (1) redundant: they do not properly cite past studies and repeat work already done; (2) secretive: results are often not publicized for a number of reasons; and (3) isolated: their methodologies are not coordinated, which for instance makes meta-analyses useless or impossible. None of these shortcomings can show up by way of the sorts of internal assessments that ethics boards (for instance) typically do. She argues that in order to properly assess the epistemic and ethical soundness of trials, we need to see them as part of a larger social knowledge-producing enterprise. Accordingly, there are community-based standards that good trials must meet. Scientists have epistemic and ethical obligations to situate their work properly with...

How can we conceptualize and promote agential choices in a complicated social world—one in which institutional, cultural, and marketing pressures convey values and norms that may not be in the best interest of individual patients? In this issue of the Kennedy Institute of Ethics Journal, Eric Racine and his colleagues explore this difficult question in the context of “preclinical” Alzheimer’s disease and complementary and alternative medicines. This is an especially murky and vexed context in which to think about patient agency, for at least two reasons. First...

In lieu of an abstract, here is a brief excerpt of the content:Editorial NoteRebecca KuklaThis issue of the Kennedy Institute of Ethics Journal brings you challenging new work on underexplored topics as well as the continuation of an important conversation the journal has been hosting over the past half-year.In “Risks, Benefits, Complications and Harms: Neglected Factors in the Current Debate on Non-therapeutic Circumcision,” Robert Darby offers a vivid critique of our current justifications for routine male circumcision. His critique focuses less on the practice itself than on how we have discussed the ethics of circumcision. He argues that our analyses of the ‘risks and benefits’ of the procedure have focused on narrowly medical concerns, and made invisible the layered symbolic, personal, and psychological significance of the foreskin and the attendant harms that may result from removing it without consent. He covers some of the fascinating social history of our attitudes towards circumcision, and develops an extended and effective analogy with mastectomy: while our current practices recognize and incorporate the potentially powerful personal significance of the female breast to identity and gender, our circumcision practices have no such sensitivity. This paper can be difficult to read, as it can be a challenge to confront a clear-headed critique of a procedure that many readers underwent or had performed on their sons with little reflection.Bridget Pratt and Adnan Hyder’s “Applying a Global Justice Lens to Health Systems Research Ethics” examines the impact of health systems research on less resource-rich countries, and ask what specific duties health systems researchers have to promote global justice. Pratt and Hyder use a health capabilities framework to think through researchers’ duties, and to analyze how we can set priorities, build states’ capacities to ensure health capabilies, and ensure post-study benefits. Typically, bioethical discussions of researchers’ duties focus entirely on clinician-researchers and clinical research. This skews the discussion, since clinicians have distinctive duties of care and distinctive relationships to their patients. More generally, the field of bioethics has traditionally been limited by a myopic, socially [End Page ix] decontextualized focus on doctor-patient relationships; overcoming this limitation has been a major theme in bioethics over the past few years, and is an important mission of this journal. Pratt and Hyder’s piece provides an important corrective.“Governing the Post Mortem Procurement of Human Body Material for Research,” by Kristof Van Assche and his colleagues, explores the ethics of how we get people to donate their bodies and tissues for research. While opt-in consent is standard in the United States and many other countries, Van Assche, et al. argue that donation should be the presumptive default choice, from which citizens can opt out. They argue for an imperfect duty to make one’s body available for research after death, based in duties to avoid free-riding and help maintain public goods. In a nuanced move, they also argue that for some citizens, donation will not be a low-cost option; it may involve serious infringements on privacy and integrity, for instance. Furthermore, the path from donations for research to the rescue of particular human lives is indirect. Hence there is no straightforward or universal duty of easy rescue involved, but only a conditional and defeasible one. For this reason, the authors argue that conscripted donation would be ethically inappropriate.Finally, Sofia Jeppson’s “Obesity and Obligation” continues a conversation about the ethics of regulating obese bodies that the journal began in our September, 2014 special issue (24.3), and continued in the December, 2014 issue (24.4) with paired papers by Matteo Bonotti and Michele Loi on food labeling. Jeppson argues that even if we grant that being obese is unhealthy and overall undesirable, obese people do not have an obligation to sustain weight loss. Hence our widespread social rhetoric of blaming and shaming the obese is morally inappropriate. Jeppson deftly combines empirical and conceptual arguments to show that sustained weight loss is so difficult for many people that it cannot plausibly count as something they ‘can’ do, and hence it is not a contender for something they ‘ought to do.’ She also argues that for some people, even if they could lose weight and keep it off, doing so...

Practical ethics is a peculiar field; it has no agreed-upon methods or foundations and takes a wide variety of forms. Its relationship to traditional “pure” philosophical ethics is contested and inconsistent. Since its beginnings, the Kennedy Institute of Ethics has been at the forefront of methodological reflections on the nature, grounding, and appropriate standards for practical ethics. Institute scholars such as Tom Beauchamp, Robert Veatch, and Henry Richardson have been among the most influential philosophers engaged in such metaethical conversations. Correspondingly, the Kennedy Institute of Ethics Journal has hosted some of the most vigorous debates in this subfield. In this issue of the journal, we..

The Routledge Companion to Bioethics is a comprehensive reference guide to a wide range of contemporary concerns in bioethics. The volume orients the reader in a changing landscape shaped by globalization, health disparities, and rapidly advancing technologies. Bioethics has begun a turn toward a systematic concern with social justice, population health, and public policy. While also covering more traditional topics, this volume fully captures this recent shift and foreshadows the resulting developments in bioethics. It highlights emerging issues such as climate change, transgender, and medical tourism, and re-examines enduring topics, such as autonomy, end-of-life care, and resource allocation

This work seeks to take seriously the common philosophical claim that individual subjects are constituted by their social world. A detailed understanding this claim requires an analysis of what is involved in being a subject, of the nature of 'the social', and of the possible constitutive relationships between these. I begin with a critical history of the idea that subjects are norm-followers, and that social groups constitute individuals by demanding their conformity to norms. I trace this 'conformity theory' through the thought of Rousseau, Hegel, Mead, and Althusser, to its manifestation in contemporary continental and Anglo-American philosophy. I criticize this theory for being unable to sufficiently accommodate creativity and social resistance. I go on to develop an account of subjects as not only norm-followers but also sense-makers, who have identities in virtue of their engagement in narrative dramas. Such subjects are socially constituted in at least two ways: through their 'dialogical' interactions with particular others , and through their position in a public culture which determines what counts as a meaningful possibility for action. This understanding of subjectivity allows me to develop a new account of the nature of social groups--such as groups based on gender, class and nationality--which provides an alternative to the conformity theory. Social groups contribute to individual identities not only by imposing norms, but also by providing sense-making resources, in the form of literary and artistic traditions as well as the actual lives and dramas of members. My account allows us to understand creativity and social resistance as enabled by subjects' membership in social groups, and it reveals how the internal diversity of a group can strengthen rather than compromise its role in individual identities. I end with a discussion of the political implications of my work

In lieu of an abstract, here is a brief excerpt of the content:Editor’s NoteQuill Kukla, Editor-in-ChiefThis issue of the Kennedy Institute of Ethics Journal contains two essays and one dialogue, all of which concern ethical and epistemological issues that arise at the meeting point of our cognitive and mental lives and technology.In the first piece, two leading bioethicists with expertise in neurotechnology, James Giordano and Joseph J. Fins, discuss a wide range of complex problems surrounding people with disorders of consciousness that make their mental states opaque to observers. It is especially difficult to know how to respectfully care for and interact with such people, since we cannot directly communicate with them and our technological methods for discerning whether and how they are conscious are nascent and unreliable. People with these disorders challenge our norms for decision-making and patient care, including end of life care. It is easy for doctors, who may only sporadically have contact with people with these disorders, to be unaware of their consciousness altogether. Because caring for people with these sorts of consciousness disorders is typically technologically intense, such care also raises difficult questions concerning resource allocation. Giordano and Fins discuss these and a wide range of other issues in depth. Their discussion of how the tools of disability studies and disability rights advocacy can and should be applied when it comes to people with whom we cannot communicate is particularly powerful. As Fins points out, the important principle, “Nothing about us without us,” cannot be honored in the case of people whose voices and experiences we cannot discern; this slogan presupposes communicative abilities. Fins and Giordano challenge us to revisit our concepts of accessibility and inclusion in ways that might let them be adapted to the needs of people with consciousness disorders.Phoebe Friesen and Anna Swartz—in “The First Smart Pill: Digital Revolution or Last Gasp?”—offer a critical social history of Abilify MyCite, a version of the popular antipsychotic drug Abilify, which contains a small sensor that digitally tracks when patients take the medication, thereby enabling compliance information to be shared with health care professionals. Friesen and Swartz show in detail the ways in which the story [End Page ix] of this drug’s use and uptake were fundamentally shaped by marketing pressures and financial incentives. Even though we do not actually have good evidence that the drug provides benefits that normal Abilify does not provide, nor that it increases compliance, Abilify MyCite was marketed as a success story. Bioethicists who were paid consultants for Otsuka, the maker of the drug, offered shallow analyses that justified the drug’s existence, focusing primarily on compliance and safety while skimming over deep ethical issues concerning privacy, surveillance, and the targeting of minority populations. Friesen and Swartz conclude that “MyCite was merely another move made in order to capitalize on the enormous success of Abilify that was slipping away from an increasingly desperate company.” Their discussion provides a fascinating case study in the production of medical knowledge and the complex ways it is controlled and shaped by financial interests, as well as driven by an optimistic enthusiasm for technological fixes in the medical and bioethical communities.Finally, Zohar Lederman and Nancy Jecker—in their essay, “Social Robots to Fend Off Loneliness?”—take up the ethically and existentially fascinating question of when and whether robots can and should be used to mitigate human loneliness. As they point out, loneliness is an urgent public health concern, particularly among older people and other vulnerable groups, but it has received very little bioethical attention. They show that one cannot give a fine-grained answer to the question of what role robots might play in helping with loneliness unless one dives into the nature and varieties of loneliness. This is a deep philosophical project, and the essay argues that loneliness comes in different varieties, many of which essentially concern deficiencies in human-human interactions that serve a wide variety of purposes for us, only some of which can be fulfilled by nonhuman robots. Lederman and Jecker raise fascinating questions about whether deception is integral to the kind of help that robots can in fact offer for fending off loneliness, and whether that would in turn...

The Routledge Companion to Bioethics is a comprehensive reference guide to a wide range of contemporary concerns in bioethics. The volume orients the reader in a changing landscape shaped by globalization, health disparities, and rapidly advancing technologies. Bioethics has begun a turn toward a systematic concern with social justice, population health, and public policy. While also covering more traditional topics, this volume fully captures this recent shift and foreshadows the resulting developments in bioethics. It highlights emerging issues such as climate change, transgender, and medical tourism, and re-examines enduring topics, such as autonomy, end-of-life care, and resource allocation.