Since the late 1980s, the human genetics and genomics research community has been promising to usher in a “new paradigm for health care”—one that uses molecular profiling to identify human genetic variants implicated in multifactorial health risks. After the completion of the Human Genome Project in 2003, a wide range of stakeholders became committed to this “paradigm shift,” creating a confluence of investment, advocacy, and enthusiasm that bears all the marks of a “scientific/intellectual social movement” within biomedicine. Proponents of this (...) movement usually offer four ways in which their approach to medical diagnosis and health care improves upon current practices, arguing that it is more “personalized,” “predictive,” “preventive,” and “participatory” than the medical status quo. Initially, it was personalization that seemed to best sum up the movement's appeal. By 2012, however, powerful opinion leaders were abandoning “personalized medicine” in favor of a new label: “precision medicine.” The new label received a decisive seal of approval when, in January 2015, President Obama unveiled plans for a national “precision medicine initiative” to promote the development and use of genomic tools in health care. (shrink)

The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...) are embracing this populist rhetoric to encourage wider public participation. We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of “citizen science” outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of “public engagement” when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the “care.data” project of the National Health Service in England, and its proactive uses in the “Precision Medicine Initiative” of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of “citizen science,” the contexts in which it is used, and its demands with respect to participation, engagement, and governance. (shrink)

Federal law often avoids setting minimum standards for women’s health and reproductive rights issues, leaving legislative and regulatory gaps for the states to fill as they see fit. This has mixed results. It can lead to state innovation that improves state-level health outcomes, informs federal health reform, and provides data on best practices for other states. On the other hand, some states may use the absence of a federal floor to impose draconian policies that pose risks to women’s and maternal (...) health. Health reforms at the federal level must trod carefully to enable state innovation, while imposing foundational safeguards for promoting women’s health nationwide. (shrink)

Bioethics and feminist scholarship has explored various justice implications of nonmedical sex selection and family balancing. However, prospective users’ viewpoints have been absent from the debate over the socially acceptable bounds of nonmedical sex selection. This qualitative study provides a set of empirically grounded perspectives on the moral values that underpin prospective users’ conceptualizations of justice in the context of a family balancing program in the United States. The results indicate that couples pursuing family balancing understand justice primarily in individualist (...) and familial terms rather than in terms of social justice for women and girls or for children resulting from sex selection. Study participants indicated that an individual’s desire for gender balance in their family is ethically complex and may not be inherently sexist, immoral, or socially consequential, particularly given the social context in which they live. Our findings suggest that the social conditions that contribute to prospective users’ desires for gender balance in their families may direct them away from recognizing or engaging broader social justice concerns relating to sexism and stratified reproduction. (shrink)

Oocyte donation raises conflicts of interest and commitment for physicians but little attention has been paid to how to reduce these conflicts in practice. Yet the growing popularity of assisted reproduction has increased the stakes of maintaining an adequate oocyte supply and minimizing conflicts. A growing body of professional guidelines, legal challenges to professional self-regulation, and empirical research on the practice of oocyte donation all call for renewed attention to the issue. As empirical findings better inform existing conflicts and their (...) potential harms, we can better attempt to reduce these conflicts. To that end, the article first describes the nature of conflicts in oocyte donation and relevant regulations and professional guidelines. We then describe studies on conflicts at four phases of oocyte donation: recruitment, screening, stimulation, and post-stimulation monitoring. Next we consider three models for conflict reduction in medicine generally: improved professional self-regulation, outright restriction like Stark anti-referral laws, or the use of conflict mediators, like in living organ donation. We ultimately conclude that improved professional self-regulation is a reasonable starting place for oocyte donation. (shrink)

Lee emphasizes the need to better understand the moral relationship between researchers and participants connoted by precision medicine, with the framework of “the gift” offering bioethics a...

The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists....

While the 2022 Supreme Court of the United States decision in Dobbs v Jackson Women’s Health Organization may bring the contingent rights of pregnant people to refuse interventions into sharper foc...

Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare and interests of (...) research participants, as well as the public, in the absence of regulatory requirements and without discouraging independent, innovative scientific inquiry. The article recommends a series of measures, including education, consultation, transparency, self-governance, and regulation to strike the appropriate balance. (shrink)

We are grateful to Friesen and colleagues for drawing attention to the tension between the protection of populations that may experience vulnerability with their inclusion in research (Friesen et a...

Hastings Center Report, Volume 51, Issue 5, Page 8-11, September‐October 2021.

The American Journal of Bioethics, Volume 12, Issue 6, Page 53-55, June 2012.

On behalf of the Robert Wood Johnson Foundation, I want to thank the Public Health Law Association and the American Society of Law, Medicine & Ethics for your leadership and the work that both you and the Centers for Disease Control and Prevention have done to grow this field. RWJF is pleased to co-sponsor this conference.The music that opened this talk is a clip from Warren Zevon, who encouraged us musically to “send lawyers, guns and money.” Zevon was a singer/songwriter (...) and social critic whose songs often took a jaundiced, somewhat cynical point of view. Even so, I know that I am probably stretching his meaning when I think of this song. I see “lawyers, guns and money” as his take on the major drivers of how change happens in a society. (shrink)

On behalf of the Robert Wood Johnson Foundation, I want to thank the Public Health Law Association and the American Society of Law, Medicine & Ethics for your leadership and the work that both you and the Centers for Disease Control and Prevention have done to grow this field. RWJF is pleased to co-sponsor this conference.The music that opened this talk is a clip from Warren Zevon, who encouraged us musically to “send lawyers, guns and money.” Zevon was a singer/songwriter (...) and social critic whose songs often took a jaundiced, somewhat cynical point of view. Even so, I know that I am probably stretching his meaning when I think of this song. I see “lawyers, guns and money” as his take on the major drivers of how change happens in a society. (shrink)

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...) meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)

Background: While employers are increasingly considering and implementing COVID-19 vaccination requirements, little is known about the reasons offered by employees seeking religious exemptions.Methods: We conducted a mixed methods analysis of all the requests for religious exemptions submitted during the initial implementation of a COVID-19 vaccination requirement at a single academic medical center in the United States.Results: Five hundred sixty-five (3.4%) employees requested religious exemptions. At least 305 (54.0%) requesters had job titles suggesting that they had direct patient contact. Four hundred (...) ninety-nine (88.3%) of requesters self-identified as Christian, of whom 120 (21.2%) identified as Roman Catholic. Requesters offered 0 to 8 (mean 2.7) categories of reasons for their request. The most frequently stated reasons pertained to the use of fetal cell lines in vaccine development and manufacturing (382, 67.6%), interest in maintaining purity (221, 39.1%), or belief in divine healing (172, 30.4%). Some requesters also volunteered evidence of the sincerity of their beliefs including examples of their religious practices (116, 20.5%), other practices (66, 11.7%), and emotional states (32, 5.7%). One hundred fifty-two applications (26.9%) contained text copied without attribution, primarily from sample religious exemption request letters available on the Internet.Conclusions: Most requesters focused on the use of fetal cell lines in the development or manufacturing of the vaccines as the justification for their request. The development of vaccines that are not reliant on fetal cell lines may increase vaccination rates. Understanding reasons for religious exemption requests may inform vaccine education and vaccination policies. (shrink)

McCoy and colleagues (2023) offer a reflective framework for data ethics and governance with several historical bioethics principles as a foundation. Their framework is one among a plethora of othe...

IntroductionClassifying the ethical issues in clinical ethics consultations is important to clinical practice and scholarship. We conducted a systematic review to characterize the typologies used to analyze clinical ethics consultations.MethodsWe identified empirical studies of clinical ethics consultation that reported types of ethical issues using PubMed. We screened these articles based on their titles and abstracts, and then by a review of their full text. We extracted study characteristics and typologies and coded the typologies.ResultsWe reviewed 428 articles; 30 of the articles (...) fulfilled our inclusion criteria. We identified 27 unique typologies. Each typology contained five to 47 categories (mean = 18). The most common categories were do-not-attempt-resuscitation orders (19 typologies, 70 percent), capacity (18 typologies, 67 percent), withholding (18 typologies, 67 percent), withdrawing (17 typologies, 63 percent), and surrogate or proxy (16 typologies, 59 percent). Only seven (26 percent) of the typologies contained all five of the most common categories. The typologies we used to characterize clinical ethics consultations exhibit significant heterogeneity and several conceptual limitations. A common typology is needed whose development may require multi-institutional collaboration and could be facilitated by professional organizations. (shrink)

Preterm birth is defined as any birth that occurs prior to 37 weeks gestation, and is a leading cause of infant mortality, neurological disabilities, breathing, feeding and vision problems, and hea...

Advocates for the professionalization of clinical bioethics argue that bioethics professionals play an important role in contemporary medicine and patient care, especially when addressing complex ethical questions that arise in the delivery of reproductive medicine. For bioethics consultants to serve effectively, they need adequate training in the medical and ethical issues that patients and clinicians will face, and they need skills to facilitate effective dialog among all parties. Because clinical ethics consultation is a “high‐stakes endeavor” that can acutely affect patient (...) care, efforts are under way to ensure that bioethics consultants have the competence to provide such guidance. Yet to date, no studies have examined whether the training of bioethics consultants meets the needs of health care professionals who are on the front lines of such issues. In fact, limited information is available on the reproductive health issues that bioethics training programs address or the degree to which these programs meet the needs of patients confronting reproductive health decisions and their clinicians. It is therefore important to answer this key question: What are the primary ethical issues encountered in reproductive medicine that currently affect patient care? Equally important, are bioethics training programs prepared to address those issues?To begin to answer these questions, we conducted parallel surveys of directors of graduate bioethics training programs and obstetrician‐gynecologists. The goal of this project is to lay the groundwork to establish a working partnership between bioethics educators and reproductive medicine practitioners to address the often troubling and frequently complex ethical issues in reproductive medicine. (shrink)

In light of a history of categorical exclusion, it is critical that pregnant people are included in research to help improve the knowledge base and interventions needed to address public health. Yet the volatile legal landscape around reproductive rights in the United States threatens to undue recent progress made toward the greater inclusion of pregnant people in research. We offer ethical and practical guidance for researchers, sponsors, and institutional review boards to take specific steps to minimize legal risks and ensure (...) the ethical conduct of research with pregnant people in an evolving legal environment. (shrink)

Freud’s earliest hysterical analysands reported a shared grievance about psychoanalysis: while their individual suffering was conditioned by social circumstances, Freud could not “alter these in any way.” If psychic illness is tied to repressive external conditions that the psychoanalyst cannot change, how can a method circumscribed to the individual’s inner life offer liberation, even cure? Motivated by the hysteric’s desire for a better life and Freud’s commitment to our intersubjectivity in common, contributors to this special issue consider psychoanalysis as a (...) political project that holds open the space of collective action—from the analyst’s couch to the picket line, from guerrilla psychoanalysis in revolutionary Algeria and Argentina to clinical treatment for the symptomatology of exile and homelessness. The contributors construct, critique, historicize, and reimagine psychoanalysis as grounds for universal solidarity. Contributors. Gila Ashtor, Ronjaunee Chatterjee, Alex Colston, Rachel Greenspan, Anna Kornbluh, Todd McGowan, Tracy McNulty, Ankhi Mukherjee, Fernanda Negrete, Michelle Rada, Samo Tomšič, Hannah Zeavin. (shrink)

This book addresses central issues in the philosophy and metaphysics of science, namely the nature of scientific theories, their partial truth, and the necessity of scientific laws within a moderate realist and empiricist perspective. Accordingly, good arguments in favour of the existence of unobservable entities postulated by our best theories, such as electrons, must be inductively grounded on perceptual experience and not their explanatory power as most defenders of scientific realism claim. Similarly, belief in the reality of dispositions such as (...) causal powers which ground the natural necessity of scientific laws must be based on experience. Hence, this book offers a synthetic presentation of an original metaphysics of science, namely a metaphysics of properties, both categorical and dispositional, while at the same time opposing strong versions of necessitarism according to which laws are true in all possible worlds. The main theses and arguments are clearly presented in a non-technical way. Thus, on top of being of interest to the specialists of the topics discussed, it is also useful as a textbook in courses for third year and more advanced university students. (shrink)

First book to identify the political project inherent in the fundamental tenets of psychoanalysis.

Introduction: philosophy and democracy -- The philosophy of possibility -- Is progress possible? -- The democratic ethos -- Human rights -- Liberal democracy as secular comedy.

Catharine MacKinnon has pioneered a new brand of anti-pornography argument. In particular, MacKinnon claims that pornography silences women in a way that violates their right to free speech. In what follows, we focus on a certain account of silencing put forward by Jennifer Hornsby and Rae Langton, and we defend that account against two important objections. The first objection contends that this account makes a crucial but false assumption about the necessary role of hearer recognition in successful speech acts. In (...) response, we argue that, as silencing primarily concerns communication, Hornsby and Langton are perfectly correct to treat hearer recognition as they do. The second objection contends that their particular account of silencing has the unacceptable result of undermining the responsibility of rapists. We here argue that no such result follows from their account. (shrink)

La contribution de Michel Troper à la théorie générale du droit et à la théorie constitutionnelle est aujourd'hui reconnue et célébrée un peu partout dans le monde. Un talent d'architecte se tient à l'origine de cette audience rarement égalée dans la sphère francophone : celui qu'il faut pour accommoder toutes les exigences, quel que soit l'ordre de valeur dans lequel on les trouve : originalité, rigueur, souci de la fonction, esthétisme, solidité, adaptation, intelligence, inquiétude, esprit critique, renoncement, réalisme... A ces (...) mérites, on ajoutera une curiosité insatiable, un goût prononcé pour l'échange et le débat, un refus distingué de l'académisme, un sens exigeant de l'amitié et une méfiance profônde pour les adjectifs... C'est cet édifice de qualités que les élèves, collègues et amis de Michel Troper sont heureux de célébrer en lui offrant ces Mélanges. (shrink)

This paper examines two influential theoretical frameworks, set forth by Russell Barkley (1997) and Thomas Brown (2005), and argues that important headway in understanding attention deficit hyperactivity disorder can be made if we acknowledge the way in which human cognition and action are essentially embodied and enactive. The way in which we actively make sense of the world is structured by our bodily dynamics and our sensorimotor engagement with our surroundings. These bodily dynamics are linked to an individual's concerns and (...) felt needs, so that what she attends to in perception, decision-making, and action is partially constituted by her cares and concerns. What I call ?affective framing? engages the whole living body, and ordinarily contributes to attentional focusing, working memory, goal-formulation, and action-monitoring. However, due to affective framing deficits, subjects with ADHD find it difficult to focus their attention, kindle their motivation, and systematically simplify cognitive procedures according to considerations of relevance, salience, and context. Thus, what is impaired in ADHD is not simply a set of executive brain functions, but rather a range of bodily dynamics through which subjects engage with their world. For this reason, intensive behavioral intervention that engages the whole living body may be the most effective, lasting treatment for ADHD. (shrink)

This volume considers formalisations of love in the 21st century. Engaging with the Slovenian School of Philosophy, the book contends that psychoanalysis is the one line of thought that exposes the role that love plays in all knowledge, emphasising the importance of love in these unsettled times.

These essays use particular issues, thinkers and texts to engage the question of God in early Christianity.

Dying serves so often within the narratives of Western popular culture, as an exercise in self-improvement both to the individual dying and to those looking on. It enlightens, ennobles and renders exceptional all those affected by it. Though mainstream cinema's “grammar of dying” is mired in similar myths, film has the potential to do dying differently: it can, instead, connect us, ethically, to the vulnerability of others. The aim of this article is to pursue this potential of film. Using the (...) mainstream grammar of dying as a starting point, I will consider how the moving image, and this ethical potential, is harnessed within two hybrid-media pieces about a loved-one's decline and death: George Saxon's art installation, “A Record of Undying” (2014) and photographer Briony Campbell's short film The Dad Project (2009). While these works will be located within the traditions and transformations of moving image practice, the primary concern here is with how such emotionally resonant pieces navigate our relation to, and responsibility for, our own and others' harsh realities. In this way, the question of ethics is grounded not in the solipsistic circuits of affective modes – whether as the catharsis or betterment of mainstream myths, or what Jane Stadler privileges as the ethical effects of empathy – but in something more inherently, more inevitably, political. (shrink)

Within the Neoplatonic tradition, the absolute transcendence of the First Principle—the One-Good, from which the whole reality in its various articulations derives—plays a crucial role. This philosophical perspective implies, particularly in Plotinus and Proclus, some fundamental philosophical consequences, above all the transcendence of the Principle with respect to being and thought as well. This necessarily implies that the One-Good must be conceived of as beyond the intelligible Beauty itself. In this paper I aim to examine the theoretical implications and consequences (...) of this perspective with specific reference to the conception of God’s absolute transcendence outlined within two texts of the Corpus Areopagiticum, overall characterized by the reworking of some fundamental Neoplatonic concepts in the context of Christian theology: the De divinis nominibus and the De mystica theologia. Indeed, in the De divinis nominibus it is shown that the names/predicates attributed to God in the Sacred Scriptures must be understood only in an allegorical-symbolic meaning, because God is above any possible definition. Not even the character of Beauty can be attributed to him, since he radically transcends it: in fact, God constitutes the absolute foundation and the very first source of Beauty itself. Therefore, God must be understood as ἀκαλλής, that is, “devoid of the connotation of Beauty”, precisely because he completely transcends it. In line with this theological and theoretical perspective, in the De mystica theologia a form of radical and absolute apophatism is developed, which in turn must ultimately lead to its own overcoming for the sake of the henosis, the mystical union with God. (shrink)

While provisions of youth sports concussion laws are very similar, little is known as to how they are being implemented, factors that promote or impede implementation, or the level of compliance in each jurisdiction. We aimed to describe state experiences with implementation in order to inform ongoing efforts to reduce the harm of sports-related traumatic brain injury and to guide future evaluations of the laws’ impacts and the development of future public health laws. We conducted key-informant interviews in 35 states (...) with recently enacted concussion legislation. States varied considerably in their readiness and capacity for implementation. Factors facilitating implementation included existing partnerships, procedures, and resources; centralized implementation authority; prior related efforts; and involvement in the policymaking process by those now charged with implementation. Inhibitors included ambiguous statutory language, unclear delegation of authority, and compliance difficulties. Ongoing challenges persist, including primary prevention; determining which providers are qualified to make return-to-play assessments and contents of those assessments; compliance difficulties in rural and under-served areas; and unclear responsibility for enforcement. Despite the similarity of youth sports concussion laws, early evidence suggests there is considerable variation in their implementation. These findings are critical for ongoing empirical investigations to accurately evaluate the laws’ provisions and to identify successful legal approaches to protecting young athletes. (shrink)

Over the past decade, a flurry of media stories devoted to sports-related concussions have drawn attention to the previously “silent epidemic” of traumatic brain injury in athletes. From 2001 to 2009, the annual number of sports-related TBI emergency department visits in individuals age 19 and under climbed from 153,375 to 248,414, an increase of increase of 62 percent. Multiple head injuries place youth athletes at risk for serious health conditions, including cerebral swelling, brain herniation, and even death — postconcussive conditions (...) that have collectively been referred to as “second impact syndrome.” Studies have shown that children and teens — and girls, in particular — are more likely to sustain a concussion and have a longer recovery time than adults. Recent research also suggests that even subconcussive hits in children and adolescents may result in longer-term health effects such as decreased cognitive functioning, increased rates of depression, memory problems, and mild cognitive impairment. (shrink)

We all know that speech can be harmful. But how? Mary Kate McGowan argues that speech constitutes harm when it enacts a norm that prescribes that harm. She investigates such harms as oppression, subordination, and discrimination in such forms of speech as sexist remarks, racist hate speech, pornography, verbal triggers, and micro-aggressions.

First published: 2010; Previous edition: 2012..

This volume brings leading figures in philosophy, political theory, intellectual history, and literary theory into a dialogue about Arendt's work and its significance for today's fractious identity politics, public ethics, and civic life.

This title considers whether any generalisations can be made about word order in language. The chapters, written by international scholars, draw on data from several 'disharmonic' and typologically distinct languages, including Mandarin Chinese, Basque, French, English, Hixkaryana (a Cariban language), Khalkha Mongolian, Uyghur Turkic, and Afrikaans.