Kennedy Institute of Ethics Journal最新文献

• Editor's Note
• Quill R. Kukla

This issue of the Kennedy Institute of Ethics Journal offers three articles that encourage readers to think in different ways about how we use and share medical facts and information. Communication and information-sharing in medicine are never value-neutral processes, and there is never an objective answer to what information should be shared or how. What information we have access to, what information we take as relevant, and how we share that information are always vexed issues. This is because medical information is inherently socially charged, value-laden, and uncertain, and sharing it is bound up with norms of privacy, principles of relevance and empirical reasoning, and the complexities of health communication. All three essays in this issue, in taking up these issues, work at the intersection of ethics and social epistemology.

In "The Goals of Medicine: Debate and Disagreements Around Contraceptive Side Effects," Ilvie Prince argues that our framing of the benefits, risks, and side effects of hormonal contraception is shaped by a specific understanding of the purpose and nature of medicine. This framing, she argues, ends up harming people who can become pregnant. While it is common to point out that contraceptive and reproductive health care are distorted by sexism, Prince argues that there are yet deeper distortions at work in our understanding of contraceptive side effects. When the primary goal of medicine is understood as the prevention of disease and dysfunction, narrowly construed, this obscures our ability to properly weigh and articulate the harms of both pregnancy and contraception. Since women are disproportionately the ones who bear the burdens and risks of both reproduction and contraception, this obfuscation has sexist results, as it disproportionately harms women. Prince also argues that once we understand the goals of medicine more broadly, we cannot avoid the uncomfortable fact that doctors must address social harms and benefits—and not just narrowly biological ones—despite the risk that this kind of intervention can serve politically nefarious ends. Prince's rich piece draws on her deep understanding of bioethics, as well as the history and science of reproductive medicine. [End Page vii]

Benjamin Chin-Yee's tightly argued paper—"Generalizations in Clinical Trials: Do Generics Help or Harm?"—digs into the details of the language of health communication and its epistemic and ethical perils. He points out that generalizations in biomedical science (statements about what is generally true) often take the form of generics. Generics are general statements that contain implicit generalizations, but don't actually use quantificational language, such as "Drug A cures condition C" or "Peop

Generalizations in medical research can be informative, but also misleading. Building on recent work in the philosophy of science and ethics of communication, I offer a novel analysis of common generalizations in clinical trials as generics in natural language. Generics, which express generalizations without terms of quantification, have attracted considerable attention from philosophers, psychologists, and linguists. My analysis draws on probabilistic and contextual features of generics to diagnose how these generalizations function and malfunction across communicative contexts in medicine. Given a high risk of misinterpretation ("slippage"), I recommend avoidance of generic claims about medical interventions in public contexts, exemplified by clinical trials and medical research more generally. Generics should only be used with vigilance in private contexts, exemplified by the physician–patient encounter. My analysis provides tools to support vigilance when communicating with generics, suggests new norms for public science communication, and raises deeper questions in the ethics of clinical communication.

• Contributors

Michiel De Proost is a postdoctoral researcher at the Department of Philosophy and Moral Sciences at Ghent University and is affiliated with the Bioethics Institute Ghent and the METAMEDICA consortium.

Benjamin Chin-Yee is a hematologist in the Division of Hematology, Western University, Canada, and a doctoral student in the Department of History and Philosophy of Science at the University of Cambridge. His research interests span philosophy of medicine, values in science, and the ethics of scientific and clinical communication.

Ilvie Prince is a doctoral candidate at Leibniz University Hannover. Her work focuses on the complex relationship between ethics and epistemology in medicine, with a particular interest in medical practices that challenge established concepts and methods.

Megan A. Dean is an assistant professor in the Philosophy Department at Michigan State University and the North American coordinator of Culinary Mind: Center for Philosophy of Food. She works in feminist bioethics with a focus on the ethics of eating.

Jonathan Ichikawa is a professor and department head in philosophy at the University of British Columbia. His research interests center around epistemology, feminist philosophy, ethics, and the philosophy of language, especially the points at which those philosophical subfields interact with one another.

Several suggestions have been made to embolden and reorient the concept of solidarity given the emergence of data-driven medicine. Recently, the European Union introduced a new consent model for so-called data altruism to motivate people to make their data available for purposes such as scientific research or improving public services. Others have introduced the alternative concept of data solidarily, which assumes that people's interests in data sharing result from a collective commitment to assist others. What those perspectives have in common is a focus on top-down organizational structures to deal with data-driven medicine. In this article, I offer an alternative reading of data solidarity, drawing on anarchist theory that highlights the disposition of mutual aid as a broader characteristic of solidarity. I begin by briefly indicating how the existing approaches to data solidarity in healthcare remain legalistic and state-centered without thoroughly considering socially critical notions of solidarity that highlight the impact of structural injustices. I then sketch out how an anarchist understanding of mutual aid could inform the conceptualization of solidarity. Finally, I focus on two implications for the practice of data-driven medicine: (1) current proposals of data altruism seem to engender a form of reversed charity; and (2) data solidarity practices could arise from the bottom-up through spontaneous order and direct action.

Reviewed by:

• Green Light Ethics: A Theory of Permissive Consent and its Moral Metaphysics by Hallie Liberto
• Jonathan Ichikawa (bio)

Hallie Liberto's Green Light Ethics offers a framework for conceptualizing permissive consent. The book is a philosopher's work of philosophy. Although it touches on non-ideal social realities, especially sexism, it is most centrally a contribution to a quite abstract literature in normative ethics, following in the tradition of scholars like David Owens, Heidi Hurd, Alan Wertheimer, and Tom Dougherty—it may have a few too many Φs and abstractions to be accessible to and comfortable for many people outside the analytic philosophical tradition. The central approach to permission and consent is general—not specific to sexual consent—although some discussions are specific to sex.

I have always appreciated and learned from Liberto's work on this topic, and I was excited to read her new book. As I'd hoped, it exhibits fresh and interesting moral and philosophical instincts, and advances plausible and interesting ideas. I did feel, however, that it was sometimes more difficult than one might hope to identify exactly what those ideas are. At key points, I found myself wanting more precision or explanation. I am not the kind of philosopher who shuns abstraction—I value both the concrete/non-ideal and the theoretical/abstract. And I'm not afraid of all those Φs. But as I see it, the point of writing in that mode—the reason it can be worth the cost in accessibility and style—is the ability to express and examine complex ideas with a high degree of precision. As I was reading this book, I found that much of my own intellectual contribution centered around attempts to interpret Liberto's ideas and technicalities before I was in a good position to learn from them. This was a bit of a shame, because there are intriguing ideas in this book, well worthy of consideration. I'll give my own reconstruction of a few of them below, along with some critical engagement.

1. domain authority

Liberto posits that there are certain domains over which people hold a special kind of moral authority, which she calls "domain authority" (38). Someone would wrong you if they acted in your domains outside of your normative control. For example, you have domain authority over sexual contact with your body; any actions by others within that domain must [End Page 429] be in accordance with your moral control, or they are violative. Liberto typically uses the following abbreviations to discuss domain authority: S is a person who may or may not be g

Since the invention of hormonal contraceptives, there has been disagreement between users and providers about the existence of side effects and their implications for care. The lack of consideration for cisgender women, and other people who may become pregnant, has often been explained by sexist bias in the philosophy of medicine. My goal is to contribute additional elements to this discussion. I will argue that there are structurally embedded assumptions about the responsibilities and goals of medicine that open the door to this sexism in the first place. While we tend to accept that contraception is part of medicine for pragmatic reasons, we do not exhibit the same form of pragmatism when it comes to dealing with side effects. This is an unjustified double standard that fails to recognize the goals of contraception and the fact that it relies on medical expertise to achieve them.

Reviewed by:

• Allergic Intimacies: Food, Disability, Desire, and Risk by Michael Gill
• Megan A. Dean (bio)

In the early days of the COVID-19 pandemic, the mundane activity of eating with or near others became physically hazardous and normatively fraught. Nourishing oneself outside one's home could raise serious risks to one's health and wellbeing, and was suddenly subject to new policies and prohibitions aimed at minimizing harm and liability. The decision to eat out demanded personal calculations of risk and benefit, as well as interpersonal negotiation, sometimes prompting contentious conversations about the realities of disease transmission and our moral responsibilities. For many people, coming to think about eating outside the home as a pressing and significant threat to health and life was a radical shift. Yet, as Michael Gill's Allergic Intimacies: Food, Disability, Desire, and Risk details, the experience of eating meals as risking lethal consequences, demanding active personal risk management (including knowledge and negotiation of laws and policies), and straining important interpersonal relationships, is quite familiar to those living with food allergies.

Allergic Intimacies offers a rich and generative exploration of the challenges of living with food allergies in the United States. A disability studies scholar, Gill frames the book as an examination of the "meanings" of food allergy from an intersectional perspective that centers both disability and race (ix). The book analyses various cultural representations of and narratives about food allergy, and traces the health effects of social and institutional structures, policies, and practices, while interweaving these findings with Gill's personal experiences with nut allergies. The focus throughout is on IgE-mediated food allergies, the sort which can cause anaphylaxis and which are exemplified by peanut allergies. The book's central claim is that common individualistic approaches to food allergy—approaches that emphasize personal and familial responsibility for allergy management—are inadequate, failing to address the systemic and structural issues that significantly disadvantage food-allergic people in marginalized groups in the U.S., especially Black people. These structural [End Page 421] issues include barriers to accessing not only food and medicine, but also the social and economic resources necessary to advocate for food allergy needs.

The book contains a preface, introduction, and brief conclusion, along with four main chapters. The introduction presents a medical and epidemiological overview of food allergies, including va

Reviewed by:

• A Theory of Bioethics by David DeGrazia and Joseph Millum
• Colin Hoy (bio) and Winston Chiong (bio)

David DeGrazia and Joseph Millum’s A Theory of Bioethics 2021 arrives at a curious time for an ambitious effort at systematic theory construction, seemingly out of step with bioethical fashion. At the same time, a prominent group of philosophical bioethicists authored an article, possibly with a touch of defensiveness, to “make the case that philosophy and philosophers still have a very important and meaningful role to play in contemporary bioethics” (Blumenthal-Barby et al. 2021). Meanwhile, the annual meeting of the American Society for Bioethics and Humanities included several expressions of impatience with the historical privileging of philosophy over more empirical, situated, and community-oriented approaches to moral problems in health.

DeGrazia and Millum’s work itself reflects the current state of bioethics and how it has changed since the heyday of grand bioethical theory construction in the late twentieth century. To apply Parfit’s philosophical taxonomy (1984), the general frameworks promulgated by theorists like Veatch, Engelhardt, and Gert, as well as Beauchamp and Childress, were by necessity revisionary. These bioethical theories were whole-cloth alternatives to a conventional and paternalistic medical ethos that was already widely acknowledged as unsatisfactory. Today, however, bioethics is a mature and institutionalized field, with well-established practices and a corpus of accepted tenets (alongside matters of ongoing but generally demarcated controversy). A plausible and fruitful contemporary theory of bioethics must be largely descriptive, in Parfit’s sense, providing an intellectual framework that gives coherence and sense to existing practice, while at the same time clarifying matters of confusion.

In contemporary bioethics, a central component of this practice is the application of the four principles of biomedical ethics—non-maleficence, beneficence, justice and autonomy—not merely as originally proposed by Beauchamp and Childress (2019), but in their refined form, following decades of exchange, critique, and revision. DeGrazia and Millum’s theory begins with two core values: well-being and respect for rights holders. [End Page 321] The bulk of the book then applies the method of reflective equilibrium to specify these two values in terms of the canonical four principles, here treated as “mid-level” constructs with readier application to specific cases than the two core values. Experienced bioethicists may have an uncanny sense of setting off from a new trailhe

• Minding Brain Injury, Consciousness, and Ethics: Discourse and Deliberations
• Joseph J. Fins (bio) and James Giordano (bio)

The annual John Collins Harvey Lecture at the Georgetown University’s Pellegrino Center for Clinical Bioethics is a forum for addressing contemporary topics at the intersection of medicine and bioethics. This year, in marking the decadal anniversary of the launch of the Brain Research through Advancing Innovative Neurotechnology (BRAIN) Initiative, the Harvey Lecture provided an interactive discussion with renowned clinician, researcher, scholar, and author, Joseph J. Fins, MD—who is the E. William Davis, Jr., MD Professor of Medical Ethics, Chief of the Division of Medical Ethics, and a Professor of Medicine at Weill Cornell Medical College—conducted by James Giordano, PhD, MPhil—who is a Professor of Neurology and Biochemistry, and Chief of the Pellegrino Center’s Neuroethics Studies Program at the Georgetown University Medical Center. The discourse focused upon the topic of covert consciousness, and the ways in which current and developing brain science technologies, together with revised practices of medicine, in general, may afford new opportunities in patient care, but may also give rise to issues, questions, challenges, and opportunities for neuroethics.

Prof. Fins, your most recent book, Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness (Fins 2015), addresses your ongoing work to employ current and emerging neurological approaches to reveal conscious functions in patients with profound brain injury and disease. To be sure, the destination—if you will—is to talk about covert consciousness. But in commencing this discussion, I’d like to propose a route, which traces your professional journey to this point in your career, and how it led you on your search to reveal consciousness in those patients who lack expressive capability. You went into palliative care first, and that brought you to where you are today. [End Page 227]

First, let me thank you and the Pellegrino Center for the honor of giving the John Harvey Collins Lecture in such an interactive manner. The forefront of neurological care—and the neuroethical issues and methods focal to such practice—wasn’t what I initially intended to do professionally, but I think that therein is a good lesson for young people’s career aspirations. Simply put, one doesn’t always know where they’ll end up at the beginning of the journey, and as Kierkegaard said, life is lived forward, but is understood backwards (Kierkegaard 1843).

In the nineties and the early 2000s, I was trying to help improve the quality of care of people at the end o

Abilify MyCite was granted regulatory approval in 2017, becoming the world’s first “smart pill” that could digitally track whether patients had taken their medication. The new technology was introduced as one that had gained the support of patients and ethicists alike, and could contribute to solving the widespread and costly problem of patient nonadherence. Here, we offer an in-depth exploration of this narrative, through an examination of the origins and development of Abilify, the drug that would later become MyCite. This history illuminates how an antipsychotic can become a top-selling drug and maintain its blockbuster status for more than a decade. It also provides a detailed case study for how knowledge is constructed within the logic of biomedical capitalism, providing impetus to reexamine claims regarding how MyCite addresses patient nonadherence, engenders patient support, and is ethicist-approved.