Quill Kukla

We are proud to introduce this special issue of the Kennedy Institute of Ethics Journal, which contains nine essays on neurodiversity and madness.Scholars have long discussed madness and neurodivergence, yet rarely from the perspective of mad and neurodivergent people as agents or as producers of knowledge, culture, or even thought. In recent years, mad and neurodivergent scholars have made significant headway into fields that have traditionally contributed to their epistemic and material harm. Prior scholars of neurodivergence and madness have explored the legacies of neuroableism and sanism in various disciplinary fields, including rhetoric and composition, philosophy of mind, technology, public policy... Read More.

We cannot understand epistemic competence without embedding agents in the social world of epistemic collaboration. Being a competent epistemic agent essentially involves being competent at specific sorts of social interactions and negotiations. More specifically, suspending judgment is a skill, and it is a skill that can only be understood as embedded in our social practices of epistemic collaboration. We cannot understand the epistemic skills that enable apt suspension, or the role that suspension plays in epistemic agency or the promotion of epistemic goods, without careful attention to the social skills we need in order to effectively promote collaborative epistemic projects. These skills are both constitutively social and ineliminably epistemic. Although social practices of suspension are always shaped by practical values and interests, they are essential to our epistemic competence and not just our practical or ethical competence.

In lieu of an abstract, here is a brief excerpt of the content:Editor's NoteQuill R. KuklaThis 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 "People with Disease D have symptom S." This contrasts with explicit quantificational generalizations, like "Drug A usually cures condition C" or "People with Disease D have symptom S 85% of the time." Philosophers of language have shown the ways in which generics are value-laden and potentially ambiguous. Chin-Yee draws on these discussions and demonstrates that generics are both common and potentially misleading in the context of public health communication. He also argues that they smuggle in values that cannot be excavated or critically examined in typical public communication contexts. Although generics have epistemic benefits, he claims that their epistemic harms outweigh these benefits, and he proposes avoiding generics when biomedical scientists are communicating with the public.Finally, Michiel De Proost, in "Data Solidarity Disrupted: Musings on the Overlooked Role of Mutual Aid in Data-Driven Medicine," takes up an emerging problem at the intersection of ethics and epistemology, namely medical data sharing. Data sharing is important for the advancement of medical knowledge, but it can also be easily exploited by companies or individuals. Typically, De Proost argues, we think of data sharing as something that patients are supposed to do altruistically, to further goals that are not directly their own, such as research or the provision of public services. But this model does little to address problems of exploitation, structural injustice, or elite capture. Instead, De Proost draws on classic anarchist theory, as well as anarchist conceptions of solidarity and mutual aid, in order to suggest a bottom-up model of what data solidarity and sharing might look like. [End Page viii]Copyright © 2024 Johns Hopkins University...

All four of the articles in this issue concern thorny ethical questions around how we should care for and study highly vulnerable patients whose well-being is already deeply compromised: addicts and their families; gravely ill people considering death as an option; elderly people who have suffered loss of function; and premature infants. All four reveal how standard bioethical questions such as how to protect patient autonomy and how to decide on a proper course of care become much harder to tease out and answer when we are confronting these vulnerabilities.Audrey Chapman and colleagues' paper, "Ethical Guidelines for Genetic Research on Alcohol Addiction and Its Applications," is our lead article this issue, and...

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...

I’m extraordinarily proud and excited to present this special issue of the Kennedy Institute of Ethics Journal, which focuses on ethical, social, and political reflections on the 2016 U.S. election and the early days of Donald Trump’s presidency. It is rare for a philosophy journal to take up such a current and pressing topic. When I decided to put together this issue, I was not sure what sort of submissions I would receive, or how many. I was moved and elated to receive dozens of excellent submissions on a wide range of topics. In making difficult choices about which ones to publish, I eliminated any that took an abstract or distanced approach to the material. Plenty of good-quality philosophical work uses this...

City Living is about urban spaces, urban dwellers, and how these spaces and people make, shape, and change one another. More people live in cities than ever before: more than 50% of the earth's people are urban dwellers. As downtown cores gentrify and globalize, they are becoming more diverse than ever, along lines of race, ethnicity, socioeconomic class, sexuality, and age. Meanwhile, we are in the early stages of what seems sure to be a period of intense civil unrest. During such periods, cities generally become the primary sites where tensions and resistance are concentrated, negotiated, and performed. For all of these reasons, understanding cities and contemporary city living is pressing and exciting from almost any disciplinary and political perspective. Quill R Kukla offers the first systematic philosophical investigation of the nature of city life and city dwellers. The book draws on empirical and ethnographic work in geography, anthropology, urban planning, and several other disciplines in order to explore the impact that cities have on their dwellers and that dwellers have on their cities. It begins with a philosophical exploration of spatially embodied agency and of the specific forms of agency and spatiality that are distinctive of urban life. It explores how gentrification is enacted and experienced at the level of embodied agency, arguing that gentrifying spaces are contested territories that shape and are shaped by their dwellers. The book then moves to an exploration of repurposed cities, which are cities materially designed to support one sociopolitical order, but in which that order collapsed, leaving new dwellers to use the space in new ways. Through detailed original ethnography of the repurposed cities of Berlin and Johannesburg, Kukla makes the case that in repurposed cities, we can see vividly how material spaces shape and constrain the agency and experience of dwellers, while dwellers creatively shape the spaces they inhabit in accordance with their needs. The book concludes with a reconsideration of the right to the city, asking what would be involved in creating a city that enabled the agency and flourishing of all its diverse inhabitants.

Discussions of uptake in the philosophy of language focus our attention on what role other people have in fixing the import, success, influence and social life of a speech act. The general idea in most discussions of uptake, despite their differences and disagreements, is whether and how an audience is cooperative or uncooperative when a speaker plays a critical role in how speech acts function. This essay is primarily concerned with “refusals”, or uncooperative uptakes. The essay analyzes the varieties of refusal; when refusal is possible why it might be challenging and when it is ethical. It examines how and when the uptake of a speech act can constitute the pragmatic form and force of the original speech act.

Unlike our last couple of issues, the essays in this issue of the Kennedy Institute of Ethics Journal are on dramatically different topics with no unifying theme. What unifies them instead is that they take up difficult issues in practical ethics that philosophers have traditionally examined abstractly, by planting them in their real-world, embodied context marked by social and material struggles and power inequalities. In his ground-breaking and richly textured paper, “The Role of Doctors in Hunger Strikes,” Yechiel Michael Barilan takes up the painful and challenging issue of when force-feeding hunger-striking prisoners in order to save their lives is ethically appropriate. To the extent that...

When I say “I know Sarah,” or “I know Berlin,” what sort of knowledge am I claiming? Such knowledge of a particular is, I claim, not reducible to either propositional knowledge-that or to traditional physical know-how. Mere, bare knowledge by acquaintance also does not capture the kind of knowledge being claimed here. Using knowledge of a place as my central example, I argue that this kind of knowledge-of, or “objectual knowledge” as it is sometimes called, is of a distinctive epistemological sort. It is a genre of inherently first-personal aesthetic knowledge, but it also, like know-how, involves active skill. I end by exploring a couple of classic problems in aesthetic epistemology, applied to the case of knowledge-of as active aesthetic knowledge.

I argue that the concept of disease serves such radically different strategic purposes for different kinds of stakeholders that coming up with a unified philosophical definition of disease is hopeless. Instead, I defend a radically pluralist, pragmatist account of when it is appropriate to mobilize the concept of disease. I argue that it is appropriate to categorize a condition as a disease when it serves legitimate strategic goals to at least partially medicalize that condition, and when the condition is pathological from inside the epistemology and metaphysics of medicine. While some conditions, like pancreatic cancer, are legitimate diseases from all stakeholders’ points of view and in any context, and while other conditions, like homosexuality, are not diseases from any legitimate point of view, there is a range of interesting, messy cases—including Deafness, autism, pre-hypertension, infertility, and ADHD, for example—whose disease status is irreducibly context-dependent and under contest.

The lead article in this issue of the Kennedy Institute of Ethics Journal, Joseph Stramondo's "Disabled by Design: Justifying and Limiting Parental Authority to Choose Future Children with Preimplantation Genetic Diagnosis," takes up an issue that is at the center of the growing field of disability studies: what are the moral limits and possibilities when parents wish to use reproductive technologies in order to create a disabled child? This question has been of abstract interest for some time. But as technologies such as pre-implantation genetic diagnosis become increasingly accessible and reliable, and as disability theorists and activists bring growing cultural attention to the ways in which lives with...

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...

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:The Maternal Imprint: The Contested Science of Maternal-Fetal Effects (2021) by Sarah RichardsonQuill KuklaQuill Kukla, review of Sarah Richardson's The Maternal Imprint: The Contested Science of Maternal-Fetal Effects (2021)I had been eagerly anticipating the release of Sarah Richardson's meticulously researched The Maternal Imprint: The Contested Science of Maternal-Fetal Effects (2021) for several years, and I was not disappointed. A leading feminist scholar of the history and philosophy of science, Richardson traces the scientific history of the idea that pregnant people's bodies control the future health, character, and well-being of their offspring. She also explores how this science is translated into social messaging and shaped by social ideology. Richardson delves into the details of the methodology, motivations, results, and communication of the science of maternal influences. She reveals a history of shaky results, contested methods, and socially loaded messaging, unified by a sustained interest in framing maternal bodies as sites of risk and responsibility for birth outcomes.A central narrative of the book is that the perceived location and mechanism through which pregnant bodies control fetal development keeps shifting around; over time, scientists have located this maternal influence in the uterine environment, the cytoplasm, the methylation of DNA, maternal nutrition, and even in the emotions, thoughts, and imagination of the mother, among other locations.1 Each time a version of the maternal influence hypothesis re-emerges, targeting a different bodily location and mechanism, it comes along with similar social messaging: pregnant people are distinctively responsible for the 'quality' of their children; their bodies are distinctive sites of risk, in need of social management; and their influence can be understood and controlled independent of the context in which they live. Given how many times this scientific hypothesis and its accompanying social messaging has died and been reborn, it is hard not to conclude, with Richardson, that background ideology compels us to keep searching for new stories that take this same form. The idea that pregnant people's bodies are understood as decontextualized and heightened sites of risk and responsibility for birth outcomes, in need of systematic discipline (both self-discipline and social discipline) in order to ensure their production of proper offspring, is one that has been explored [End Page e-1] in quite a bit of depth within feminist theory and reproductive ethics over the last thirty years. To name just a few, Barbara Duden's Disembodying Women: Perspectives on Pregnancy and the Unborn (1993), Deborah Lupton's "Risk and the Ontology of Pregnant Embodiment" (1999), Lisa Mitchell's Baby's First Picture: Ultrasound and the Politics of Fetal Subjects (2001), and my own Mass Hysteria: Medicine, Culture, and Mothers' Bodies (2005) are all works firmly within this tradition. What is new about Richardson's book is not the development and exploration of this cultural narrative and imaginary, but rather her rigorous and skillful analysis of the science that has grown out of and undergirded it. Richardson is a masterful writer, who makes scientific details comprehensible and fascinating. Her historical and epistemological analyses of exactly what shaped the science at each stage, what each scientific iteration did and didn't manage to show, and how these different scientific movements were translated into public messaging, is sharp and compelling. Richardson shows us the inner workings of how scientific programs build momentum; how scientists make methodological decisions; and how results feed into ongoing research programs. From this book, we also develop a rich sense of just how much uncertainty is baked into the science of human development, and how both scientific and public excitement about a given research program are mostly independent of the success and security of the science that comes out of it. The book traces 150 years of the history of the science of maternal influences, culminating in the current focus on epigenetics—which, like various past maternal influence theories, has ignited our broader social imagination. Epigenetics, roughly, is the study of molecular changes outside our DNA that control how genes express themselves. Environmental stimuli (such as stress) can cause changes in methylation, and thereby influence the expression of the genome: "Epigenetic markers that help determine whether a...

In this issue's lead article, "Adolescent Medical Transition is Ethical: An Analogy with Reproductive Health," Florence Ashley argues that insofar as we accept that abortion and birth control can be ethical interventions for adolescents, so, by analogy, should we treat interventions such as puberty blockers that aid in gender transition as ethical. None of these interventions treat illness or pathology, but rather they operate on healthy bodies, not in order to cure, but in order to help patients live in line with their fundamental self-conception and to realize their embodied goals. Parenting, pregnancy, and gender all go to the heart of our embodied identities and sense of self, they point out. Moreover, Ashley...

Wilfrid Sellars's iconic exposé of the ‘myth of the given’ taught us that experience must present the world to us as normatively laden, in the sense that the contents of experience must license inferences, rule out and justify various beliefs, and rationalize actions. Somehow our beliefs must be governed by the objects as they present themselves to us. Often this requirement is cashed out using language that attributes agent-like properties to objects: we are described as ‘accountable to’ objects, while objects ‘hold us’ to standards, and so forth. But such language is either deeply anti-naturalistic or trades on a set of metaphors in need of a literal translation. We offer an explanation of how the material features of the world, as received in experience, can rationally constrain our beliefs and practices—one that makes no recourse to this imagery. In particular, we examine the structure of ostensive practices (that is, practices of directing one another's attention to objects and features of the world) and the distinctive role they play in making us jointly beholden to how things actually are

The goal of this paper is to give an account of the pragmatic and social function of slurs, taken as speech acts. I develop a theory of the distinctive illocutionary force and pragmatic structure of slurs. I argue that slurs help to produce subjects who occupy social identities carved out by pernicious ideologies, and that they do this whether or not anyone involved intends for the slur to work that way or has any particular feelings or conscious thoughts associated with using or being targeted by the slur. I offer an Althusser‐inspired account of what an ideology is, as well as of the mechanisms by which slurs can serve to cue and strengthen ideologies. A slur, I argue, is a kind of interpellation, which reduces its target to a generic identity and derogates and subordinates its target. I explore how slurs and ideologies work in tandem to constitute and fortify one another. I end by applying my account to see how well it fits and helps illuminate three quite different, especially complex slurs.

This paper discusses a crisis of accountability that arises when scientific collaborations are massively epistemically distributed. We argue that social models of epistemic collaboration, which are social analogs to what Patrick Suppes called a “model of the experiment,” must play a role in creating accountability in these contexts. We also argue that these social models must accommodate the fact that the various agents in a collaborative project often have ineliminable, messy, and conflicting interests and values; any story about accountability in a massively distributed collaboration must therefore involve models of such interests and values and their methodological and epistemic effects