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. 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)

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...

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

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)

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)

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...

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

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)

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)

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....

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)

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)

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...

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)

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)

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)

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)

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...

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)

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)

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)

Although mental health professionals traditionally have been viewed as sole experts and decision-makers, there is increasing awareness that the experiential knowledge of former patients can make an important contribution to mental health practices. I argue that current patients likewise possess a kind of expertise, and that including them as active participants in diagnosis and treatment can strengthen their autonomy and allow them to build up important habits and skills. To make sense of these agential benefits and describe how patients might (...) act as co-regulators of a therapeutic encounter, I look to the enactivist notion of “participatory sensemaking”. (shrink)

In this consensus report by a diverse group of academics who conduct and/or are concerned about social and behavioral genomics (SBG) research, the authors recount the often‐ugly history of scientific attempts to understand the genetic contributions to human behaviors and social outcomes. They then describe what the current science—including genomewide association studies and polygenic indexes—can and cannot tell us, as well as its risks and potential benefits. They conclude with a discussion of responsible behavior in the context of SBG research. (...) SBG research that compares individuals within a group according to a “sensitive” phenotype requires extra attention to responsible conduct and to responsible communication about the research and its findings. SBG research (1) on sensitive phenotypes that (2) compares two or more groups defined by (a) race, (b) ethnicity, or (c) genetic ancestry (where genetic ancestry could easily be misunderstood as race or ethnicity) requires a compelling justification to be conducted, funded, or published. All authors agree that this justification at least requires a convincing argument that a study's design could yield scientifically valid results; some authors would additionally require the study to have a socially favorable risk‐benefit profile. (shrink)

First published: 2010; Previous edition: 2012..

Michelle Kosch examines the conceptions of free will and the foundations of ethics in the work of Kant, Schelling, and Kierkegaard. She seeks to understand the history of German idealism better by looking at it through the lens of these issues, and to understand Kierkegaard better by placing his thought in this context. Kosch argues for a new interpretation of Kierkegaard's theory of agency, that Schelling was a major influence and Kant a major target of criticism, and that both (...) the theory and the criticisms are highly relevant to contemporary debates. (shrink)

This chapter examines applied ethics regarding prostitution and criminalization. It proceeds in three parts. Part one examines different ways of defining prostitution, part two reviews five objections to prostitution that have framed standard debates regarding criminalization, and part three examines issues that have arisen in ethical debates regarding prostitution and criminalization in recent decades. Along the way, the chapter illustrates the extent to which debates in applied ethics regarding the criminalization of prostitution depend in large part on what prostitution is (...) like in a given social context. Further, the chapter emphasizes that satisfactory answers to this question depend not only on empirical evidence but on ethical disagreements regarding underlying concepts such as choice, freedom, and consent. (shrink)

A comprehensive proposal for a conceptual framework for describing conscious experience in dreams, integrating philosophy of mind, sleep and dream research, and interdisciplinary consciousness studies. Dreams, conceived as conscious experience or phenomenal states during sleep, offer an important contrast condition for theories of consciousness and the self. Yet, although there is a wealth of empirical research on sleep and dreaming, its potential contribution to consciousness research and philosophy of mind is largely overlooked. This might be due, in part, to a (...) lack of conceptual clarity and an underlying disagreement about the nature of the phenomenon of dreaming itself. In Dreaming, Jennifer Windt lays the groundwork for solving this problem. She develops a conceptual framework describing not only what it means to say that dreams are conscious experiences but also how to locate dreams relative to such concepts as perception, hallucination, and imagination, as well as thinking, knowledge, belief, deception, and self-consciousness. Arguing that a conceptual framework must be not only conceptually sound but also phenomenologically plausible and carefully informed by neuroscientific research, Windt integrates her review of philosophical work on dreaming, both historical and contemporary, with a survey of the most important empirical findings. This allows her to work toward a systematic and comprehensive new theoretical understanding of dreaming informed by a critical reading of contemporary research findings. Windt's account demonstrates that a philosophical analysis of the concept of dreaming can provide an important enrichment and extension to the conceptual repertoire of discussions of consciousness and the self and raises new questions for future research. (shrink)

The incredible story of the woman--actress, dancer, yogi, globetrotter--who brought yoga to America and to much of the rest of the western world. Born Eugenia Peterson in early 20th century Russia, Indra Devi was a rebel from earliest childhood. In the 1930s she fled to Berlin, and then--driven by her passion for yoga and a fascination with yogic philosophy (and Theosophy)--she journeyed to India, at a time when unaccompanied young European women were unheard of. In India she performed perhaps her (...) greatest feat--convincing even the most recalcitrant yogis, from Krishnamurti to Krishnamacharya, to reveal to her the secrets of their art. She would go on to share what she learned with men and women around the world--teaching Gloria Swanson and Greta Garbo in Hollywood, then moving to Mexico and later to Buenos Aires--helping to usher in the craze for yoga that continues unabated in the U.S. and throughout the world today. Written with vivid clarity, and describing the extraordinary spread and popularization of a philosophical movement, The Goddess Posebrings Indra Devi's little known but wholly remarkable story to life. (shrink)

Embodied Selves and Divided Minds examines how research in embodied cognition and enactivism can contribute to our understanding of the nature of self-consciousness, the metaphysics of personal identity, and the disruptions to self-awareness that occur in case of psychopathology. The book reveals how a critical dialogue between Philosophy and Psychiatry can lead to a better understanding of important issues surrounding self-consciousness, personal identity, and psychopathology.

This chapter outlines Kierkegaard’s account of Christian belief and the foundations of Christian ethics, and his positive account of moral agency.

Chapters Five through Nine of Book Two of Brentano's 1874 Psychology From an Empirical Standpoint were republished in 1911 with a substantive Appendix of Brentano's remarks. In the Appendix Brentano makes a significant addition to his theory of intentionality. In particular, he introduces new modes within the mode of presentation itself. These new modes are needed to account for our thinking about anything in a relational structure (in recto and in obliquo modes) and for our thoughts about time (the temporal (...) mode). I want to suggest that in the end Brentano simply takes relations to be different kinds of modes. (shrink)

This major study of Kant provides a detailed examination of the development and function of the doctrine of transcendental illusion in his theoretical philosophy. The author shows that a theory of 'illusion' plays a central role in Kant's arguments about metaphysical speculation and scientific theory. Indeed, she argues that we cannot understand Kant unless we take seriously his claim that the mind inevitably acts in accordance with ideas and principles that are 'illusory'. Taking this claim seriously, we can make much (...) better sense of Kant's arguments and reach a deeper understanding of the role he allots human reason in science. (shrink)

This is the first full-length biography in more than fifty years of Immanuel Kant, one of the giants amongst the pantheon of Western philosophers as well as the one with the most powerful and broad influence on contemporary philosophy. It is well known that Kant spent his entire life in an isolated part of Prussia living the life of a typical university professor. This has given rise to the view that Kant was a pure thinker with no life of his (...) own, or at least none worth considering seriously. In this biography, Manfred Kuehn debunks that myth once and for all. Taking account of the most recent scholarship Professor Kuehn allows the reader to follow the same journey that Kant himself took in emerging as a central figure in modern philosophy. (shrink)

The emergence of environmental governance practices raises a fundamental question as to whether they are substantive or symbolic. Toward that end, we analyze the relationship between a firm’s environmental governance and its environmental management as reflected in its ultimate outcome, environmental performance. We posit that substantive practices would bring changes in organizations, most notably in terms of improved environmental performance, whereas symbolic practices would portray organizations as environmentally committed without making meaningful changes to their operations. Focusing on a sample of (...) environmentally sensitive firms, results are consistent with environmental governance mechanisms being predominantly part of a symbolic approach to manage stakeholder perceptions on environmental management, having little substantial impact on organizations. Statistical analyses show mostly that there is no relation between environmental governance mechanisms and environmental performance, measured in terms of regulatory compliance, pollution prevention, and environmental capital expenditures. However, there is some indication that environmental incentives are associated with pollution prevention. Interviews with corporate directors shed further light on these results by underlining that environmental governance mechanisms are employed at the board level to protect the organization from reputational and/or regulatory harm, but are not necessarily intended to proactively improve environmental performance. (shrink)

Much existing literature in anthropology suggests that teaching is rare in non-Western societies, and that cultural transmission is mostly vertical (parent-to-offspring). However, applications of evolutionary theory to humans predict both teaching and non-vertical transmission of culturally learned skills, behaviors, and knowledge should be common cross-culturally. Here, we review this body of theory to derive predictions about when teaching and non-vertical transmission should be adaptive, and thus more likely to be observed empirically. Using three interviews conducted with rural Fijian populations, we (...) find that parents are more likely to teach than are other kin types, high-skill and highly valued domains are more likely to be taught, and oblique transmission is associated with high-skill domains, which are learned later in life. Finally, we conclude that the apparent conflict between theory and empirical evidence is due to a mismatch of theoretical hypotheses and empirical claims across disciplines, and we reconcile theory with the existing literature in light of our results. (shrink)

Philosophers disagree about what the folk concept of pain is. This paper criticises existing theories of the folk concept of pain, i.e. the mental view, the bodily view, and the recently proposed polyeidic view. It puts forward an alternative proposal – the polysemy view – according to which pain terms like “sore,” “ache” and “hurt” are polysemous, where one sense refers to a mental state and another a bodily state, and the type of polysemy at issue reflects two distinct but (...) related concepts of pain. Implications with respect to issues in philosophy of pain are also drawn. (shrink)