In lieu of an abstract, here is a brief excerpt of the content:Minding Brain Injury, Consciousness, and Ethics: Discourse and DeliberationsJoseph 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. James GIORDANO: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]Prof. Joseph J. FINS: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 of life, and I wrote a book, entitled The Palliative Ethic of Care: Clinical Wisdom at Life’s End (Fins 2006), in which I addressed notions of phronesis—practical wisdom—in integrating theory and practice toward improving how people die. I became interested in the Quinlan case (Quinlan 1976), and the right to die, and around the same time, I ran into a colleague of mine at Cornell: Dr. Nicholas D. Schiff. Dr. Schiff is a neurologist, who was a protégé of Fred Plum, who was the originator of the concept of the vegetative state with Bryan Jennett, back in 1972. Fred was both of our teachers here at Cornell. Niko (Dr. Schiff) was interested in patients with disorders of consciousness, and was beginning to envision doing work—that ultimately, we did—using deep brain stimulation (DBS) to try to treat patients in the minimally conscious state, a category that was subsequently codified in 2002.I realized that a whole population of people—with these disorders of consciousness—had been somewhat marginalized, and their neglect essentially devolves back to the considerations of the right to die. The right to die was established in the Quinlan case because Judge Hughes—the presiding chief judge of the New Jersey Supreme Court—talked about Ms. Quinlan’s loss of a cognitive, sapient state as being the moral warrant for her right to die, given the fact that it was viewed as a futile situation. I recognized, over the ensuing years—from my background in palliative and end-of-life care—[1] that we had over-generalized notions of futility... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:A Theory of Bioethics by David DeGrazia and Joseph MillumColin Hoy (bio) and Winston Chiong (bio)Review of David DeGrazia and Joseph Millum, A Theory of Bioethics (Cambridge University Press, 2021)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 trailhead, and yet, eventually finding themselves still walking a familiar path. However, this way of introducing and explicating the four principles will likely be more accessible to a wider audience, including high-level undergraduates and graduate students not already versed in the revisions, refinements, and compromises embedded in Beauchamp and Childress’s discussions.Two other features recommend this book as a resource for trainees and interested non-experts seeking to deepen their understanding of bioethics. First, the clarity of its style and organizational approach provides a welcome orientation for non-specialists. The chapters are structured so that major contending perspectives are outlined before the authors develop arguments for their own positions in that context. Each chapter proceeds by considering applications of the broader theory, showing how it can illuminate potential candidate approaches or policies, as well as demonstrating how to use the tools of ethical analysis to evaluate these proposals in both ideal and non-ideal cases. This didactic approach to the relationship between conceptual argument and practice will be accessible to many who are initially unfamiliar with or intimidated by theory. Second the commendable decision to make the book electronically available and accessible also has the potential to broaden the reach of the work, and in particular, to engage parties in under-resourced settings, which have so often been overlooked in bioethical discourse.As noted above, while the authors’ approach is descriptive in Parfit’s sense, it is not necessarily conservative. In many places, the authors highlight how their theory includes elements or renders conclusions that are not broadly accepted, and following the method of reflective equilibrium, they advocate for these positions both in terms of broad principles and particular judgments about cases. This begins with their dual-value... (shrink)

ABSTRACT: Social robots are increasingly being deployed to address social isolation and loneliness, particularly among older adults. Clips on social media attest that individuals availing themselves of this option are pleased with their robot companions. Yet, some people find the use of social robots to meet fundamental human emotional needs disturbing. This article clarifies and critically evaluates this response. It sets forth a framework for loneliness, which characterizes one kind of loneliness as involving an affective experience of lacking human relations (...) that provide certain social goods. Next, the article discusses social robots and critically reviews the literature on the ethics of using them in light of this loneliness characterization. Third, we present a normative argument connecting the philosophical critique of loneliness-as-absence with the design and deployment of social robots. Finally, we draw out the implications of our analysis for public health and for interrogating the aims of commercial companies who make social robots. (shrink)

ABSTRACT: 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. (shrink)

ABSTRACT: COVID-19 elicited a rapid emergence of new mutual aid networks in the US, but the practices of these networks are understudied. Using qualitative methods, we explored the empirical ethics guiding US-based mutual aid networks' activities, and assessed the alignment between principles and practices as networks mobilized to meet community needs during 2020–21. We conducted in-depth interviews with 15 mutual aid group organizers and supplemented these with secondary source materials on mutual aid activities and participant observation of mutual aid organizing (...) efforts. We analyzed participants' practices in relation to key mutual aid principles as defined in the literature: 1) solidarity not charity; 2) non-hierarchical organizational structures; 3) equity in decision-making; and 4) political engagement. Our data also yielded a fifth principle, "mutuality," essential to networks' approaches but distinct from anarchist conceptions of mutualism. While mutual aid networks were heavily invested in these ethical principles, they struggled to achieve them in practice. These findings underscore the importance of mutual aid praxis as an intersection between ethical principles and practices, and the challenges that contemporary, and often new, mutual aid networks responding to COVID-19 face in developing praxis during a period of prolonged crisis. We develop a theory-of-change model that illuminates both the opportunities and the potential pitfalls of mutual aid work in the context of structural inequities, and shows how communities can achieve justice-oriented mutual aid praxis in current and future crises. (shrink)

Effective altruism has a strategy problem. Overreliance on a strategy of donating to the most effective charities keeps us on the firefighter's treadmill, continually pursuing the next-highest quantifiable marginal gain. But on its own, this is politically shortsighted. Without any long-term framework within which these individual rescues fit together to bring about the greatest overall impact, we are almost certainly leaving a lot of value on the table. Thus, effective altruists' preferred means undercut their professed aims. Alongside the charity framework, (...) the more effective altruist ought to consider a mutual aid framework, which better acknowledges and honors the unavoidably political commitments of effective altruism to reimagine and remake the world. (shrink)

Effective Altruism is a popular social movement that encourages individuals to donate to organizations that effectively address humanity’s most severe poverty. However, because Effective Altruists are committed to doing the most good in the most effective ways, they often argue that it is wrong to help those nearest to you. In this paper, I target a major subset of Effective Altruists who consider it a moral obligation to do the most good possible. Call these Obligation-Oriented Effective Altruists (OOEAs), and their (...) movement Obligation-Oriented Effective Altruism (OOEA). I argue that insofar as this variety of OOEA seems to commit us to refrain from helping the people right in front of us, there is something intuitively wrong about it. In response, I introduce an alternative model that embraces partiality: Mutual Aid. Mutual Aid is a network of community members, usually from the same geographical region, who share a commitment to offer, receive, and exchange material goods, wealth, and social support. I recommend Mutual Aid as a liberatory model, which—through empathy, solidarity, and care—mobilizes community building and provides a catalyst for community advocacy. As such, we should resist the claims of OOEAs that partially distributing our funds to people or causes we care about is morally wrong or even less than ideal. We do not have a moral obligation to use our funds “effectively;” rather, we have a broader obligation to address human suffering, and Mutual Aid is one moral alternative for discharging this duty. (shrink)

ABSTRACT: This study describes the results of a social analysis of mutual aid solidarity during Nigeria's #EndSARSprotests against Special Anti-Robbery Squad (SARS) brutality in Nigeria. The results reveal that the protests achieved success with the assistance of mutual aid solidarity networks. Yet there is a dearth of literature exploring the reasons for this accomplishment. Nigeria is a country where everything done usually has a religious coloration and interpretation; however, the 2020 mutual aid solidarity in the #EndSARS protests proved otherwise. Using (...) in-depth interviews, data were elicited from 20 youths, including participants and observers during the #EndSARS mutual aid solidarity protests. Using a phenomenological approach, this study found that the mutual aid support group transcended traditional geopolitical, gender, and religious barriers, and youth and the elderly participated in the protest. Further results show that the 2020 #End-SARS mutual aid solidarity brought about an accountable and transparent civil society, including the financial disbanding of the Nigerian Police Force, the SARS unit responsible for extrajudicial killings. The findings also indicate that Nigerian politicians are the real problem, not religion. Recommendations are discussed. (shrink)

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... (shrink)

ABSTRACT:In the last two decades it has become increasingly common to advocate for a complete ban on the sale of cigarettes. One reason in favor of such a ban is egalitarian: differences in the prevalence of smoking between socioeconomic groups go a long way in explaining health inequality, and a complete ban might be effective in reducing this inequality. However, a complete ban might also be objectionable on egalitarian grounds if issued with a discriminatory intent or if it is selectively (...) paternalistic. This article argues that a complete ban is likely to be guilty of both, especially when one of its aims is to reduce unequal rates of smoking between groups. A complete ban on the sale of cigarettes thus exhibits a curious feature: in aiming to reduce inequality it threatens to be inegalitarian. This is characteristic of a wider class of public health policies that deserves further attention by egalitarians. (shrink)

ABSTRACT:The judgments of conscientious and informed experts play a central role in two elements of clinical equipoise. The first, and most widely discussed, element involves ensuring that no participant in a randomized trial is allocated to a level of treatment that everyone agrees is substandard. The second, and less often discussed, element involves ensuring that trials are likely to generate social value by producing the information necessary to resolve a clinically meaningful uncertainty or disagreement about the relative merits of a (...) set of interventions. The distribution of judgments in expert communities can take many forms, each with important implications for whether a trial satisfies one or both elements of clinical equipoise. In this article we use a graphical approach to represent three ways in which expert community uncertainty can vary: by spread, modality, and skew. Understanding these different distributions of expert judgment has three important implications: it helps to make operational the requirement of social value, it shows that some conditions for initiating studies to promote social value diverge from common assumptions about clinical equipoise, and it has important implications for how trials should be designed and monitored, and what patients should be told during informed consent. (shrink)

ABSTRACT:Cities are struggling to balance the moral imperatives of sustainable development, with equity and social justice often ignored and negatively impacted by climate change mitigation and adaptation. Yet, the nature of these impacts on social justice has not been comprehensively investigated and little ethical guidance exists on how to better promote social justice in urban climate change planning practice. This article addresses the normative question: How should urban climate change planning advance social justice? It gathers empirical literature documenting the inclusivity (...) and equity impacts of urban climate change planning and thematically analyses that literature for dimensions of social justice drawn from philosophical and urban justice theory. Study findings demonstrate that four characteristics of climate change planning in cities—underlying neoliberal ideology, unequal treatment, green gentrification, and exclusion from decisionmaking—comprise, create, or worsen social injustices across six dimensions. These characteristics are often interconnected and inseparable. Where neoliberal ideology guides urban climate change planning, the other three characteristics frequently occur as well. The article concludes by arguing that, at a minimum, urban planners and climate planners have an obligation of justice to avoid undertaking climate change planning that exhibits any of the four characteristics and to address injustices generated where planning has such characteristics. It further suggests that planners' negative obligations likely extend beyond this because the literature review revealed gaps in existing empirical data on the equity impacts of urban climate change planning. (shrink)

ABSTRACT:Autistic adults suffer from an alarmingly high and increasing unemployment rate. Many companies use pre-employment personality screening tests. These filters likely have disparate impacts on neurodivergent individuals, exacerbating this social problem. This situation gives rise to a bind. On the one hand, the tests disproportionately harm a vulnerable group in society. On the other, employers think that personality test scores are predictors of job performance and have a right to use personality traits in their decisions. It is difficult to say (...) whether these negative disparate impacts are a case of wrongful discrimination. Nevertheless, we will show that pre-employment personality tests prey on several features of autism in an unfair way, and for this reason, we suggest the contours of some regulation that we deem necessary. (shrink)