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....

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

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

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)

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...

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)

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)

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...

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)

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...

This book is a collection of secondary essays on America's most important philosophic thinkers—statesmen, judges, writers, educators, and activists—from the colonial period to the present. Each essay is a comprehensive introduction to the thought of a noted American on the fundamental meaning of the American regime.

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)

Catharine MacKinnon claims that pornography silences women in a way that violates the right to free speech. This claim is, of course, controversial, but if it is correct, then the very free speech reasons for protecting pornography appear also to afford reason to restrict it. For this reason, it has gained considerable attention. The philosophical literature thus far focuses on a type of silencing identified and analyzed by Jennifer Hornsby and Rae Langton (H&L). This article identifies, analyzes, and argues for (...) the importance of a different type of silencing. As we shall see, there are compelling reasons in favor of regarding H&L silencing as a free speech violation and, as I argue here, the same can be said for sincerity silencing. Although additional work needs to be done to show that either one actually is a free speech violation, I demonstrate here that both types of silencing equally warrant this further attention. Moreover, I show that sincerity silencing is a fairly widespread phenomenon; so, therefore, is the harm it constitutes. As a result of these considerations, then, we can safely conclude that sincerity silencing also requires our attention. (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)

Une nouvelle écrite pour l’anthologie Octavia’s Brood: Science Fiction Stories from Social Justice Movements [enfants d’Octavia: des histoires SF tirées des mouvements de justice sociale], éditée par adrienne maree brown et Walidah Imarisha. L’histoire parle d’un futur dans lequel toutes les personnes handicapées (appelées I. P. ou ImParfait·es) ont été envoyées sur une autre planète où, débarrassées des soldats envoyés pour les surveiller, ielles se sont créé une vie faite d’entraide. Cette vie est menacée par les Parfait·es, qui s’apprêtent à (...) revenir prendre le contrôle et créer une nouvelle dystopie pour eux. (shrink)

Le néologisme dévalider est formé sur le radical « valide » (compris au sens de : validé par le validisme) auquel s’ajoute le préfixe privatif « dé- » (compris au sens de : défaire, déconstruire, détruire). Il reprend et littéralise l’anglais disabled, qui se traduit habituellement en « personne handicapée ». À côté de cette signification ordinaire, les luttes handies se sont emparées du verbe dévalider pour signifier deux aspects contradictoires mais complémentaires. D’un côté, les mondes dévalidés sont les mondes (...) que prépare la lutte anti-validiste, c’est-à-dire une société sans validisme (dé-validé en ce sens qu’il n’est plus rapporté à la norme valide). De l’autre, les mondes dévalidés désignent les mondes que prépare le capitalisme extractiviste, c’est-à-dire des mondes où plus personne ne peut être dit valide (dévalidé en ce sens que tout le monde, bien qu’à des degrés différents, y voit ses capacités déplacées, par exemple en raison de la toxicité de l’atmosphère). Les mouvements pour la justice handie se situent au point de tension entre d’un côté une lutte pour une dévalidation libératrice (contre le validisme qui rend le handicap invivable) et de l’autre une lutte contre la dévalidation forcée (contre l’extractivisme qui exploite la débilitation des vies). Ce texte sert d’introduction à la majeure « Justice handie », qui rassemble des écrits universitaires, militants et poétiques écrits depuis et avec les luttes anti-validistes. (shrink)

À l’été 2014, les mouvements Black Lives Matter et Free Palestine convergent. C’est l’occasion pour la théoricienne transdisciplinaire Jasbir K. Puar de réfléchir à la dévalidation forcée des populations racialisées. S’appuyant sur les théories handies décoloniales et crip-of-color, Puar considère la manière dont les corps non-blancs sont exclus de la reconnaissance du handicap. Alors que les meurtres policiers de personnes noires aux États-Unis touchent une large majorité de personnes noires handicapées, et alors que la destruction systématique des hôpitaux palestiniens par (...) Israël apparaît comme une stratégie d’affaiblissement de la population, Puar développe les outils théoriques intersectionnels pour nommer « le droit de mutiler » exercés par les États modernes/coloniaux contre les populations qu’ils subjuguent. Appelant à ne pas se satisfaire des rhétoriques de l’empuissancement et de la fierté handie, ce texte (qui sert d’avant-propos au livre éponyme, Le droit de mutiler. Débilité, capacité, handicap ) jette les fondations théoriques d’une coalition antivalidiste/antiraciste contre les brutalités policières et néocoloniales. (shrink)

This essay examines Harriet Jacobs’s Incidents in the Life of a Slave Girl (1861) in light of new archival findings on the medical practices of Dr. James Norcom (Dr. Flint in the narrative). While critics have sharply defined the feminist politics of Jacobs’s sexual victimization and resistance, they have overlooked her medical experience in slavery and her participation in reform after escape. I argue that Jacobs uses the rhetoric of a woman-led health reform movement underway during the 1850s to (...) persuade her readers to end slavery. This essay reconstructs both contexts, revealing that Jacobs links enslaved women’s physical and sexual vulnerability with her female readers’ fears of male doctors’ threats to modesty and of their standard bleed-and-purge treatments. Jacobs illustrates that slavery damages women’s health as much as heroic medicine, and thus merits the political activism of her readers. Specifically, Jacobs dramatizes her conflicts with the rapacious physician-master at moments that are crucial to women’s health: marriage, pregnancy, childbirth, and motherhood. Ultimately, this essay advances a new understanding of the role of health reform in social change: it galvanized other movements such as women’s rights and abolition, particularly around issues of bodily autonomy for women and African Americans. (shrink)

Bruce L. Kinzer offers a rich examination of personal and political themes in the life of John Stuart Mill, one of the most influential liberal thinkers of the nineteenth century. By investigating young Mill's formative period and his relations with his father, Harriet Taylor, and Thomas Carlyle, Kinzer casts light on the challenges Mill faced in understanding himself and what he wished to become. Kinzer's political explorations probe issues central to the appreciation of Mill as an engaged political thinker (...) and actor and offers an insightful portrait of a complex and towering figure."--BOOK JACKET. (shrink)

George Herbert Mead, one of America’s most important and influential philosophers, a founder of pragmatism, social psychology, and symbolic interactionism, was also a keen observer of American culture and early modernism. In the period from the 1870s to 1895, Henry Northrup Castle maintained a correspondence with family members and with Mead—his best friend at Oberlin College and brother-in-law—that reveals many of the intellectual, economic, and cultural forces that shaped American thought in that complex era. Close friends of John Dewey, Jane (...) Addams, and other leading Chicago Progressives, the author of these often intimate letters comments frankly on pivotal events affecting higher education, developments at Oberlin College, Hawaii, progressivism, and the general angst that many young intellectuals were experiencing in early modern America. The letters, drawn from the Mead-Castle collection at the University of Chicago, were collected and edited by Mead after the tragic death of Henry Castle in a shipping accident in the North Sea. Working with his wife Helen Castle, he privately published fifty copies of the letters to record an important relationship and as an intellectual history of two progressive thinkers at the end of the nineteenth century. American historians, such as Robert Crunden and Gary Cook, have noted the importance of the letters to historians of the late nineteenth century. The letters are made available here using the basic Mead text of 1902. Additional insights into the connection between Mead, John Dewey, Henry and Harriet Castle, and Hawaii’s progressive kindergarten system are provided by the foundation’s executive director Alfred L. Castle. Marvin Krislov, president of Oberlin College, has added additional comments on the importance of the letters to understanding the intellectual relationship that flourished at Oberlin College. Published with the support of the Samuel N. and Mary Castle Foundation. (shrink)

Il saggio analizza la polemica tra Sarah e Angelina Grimké, Catharine Beecher e Harriet Martineau sull'abolizione della schiavitù e i diritti delle donne, esaminando l'utilizzo di due strumenti critici: i «vincoli di femminilità» e l’«analogia» tra condizione della donna e dello schiavo. Da questo ricco e teso confronto, emerge in particolare che il riconoscere o meno il nesso tra dominio razziale e sessuale è determinante nella definizione di differenti concezioni della femminilità. Inoltre, queste differenze si ripercuotono sul modo di (...) intendere i concetti chiave della democrazia e sulla possibilità di ripensarli criticamente. (shrink)

’Autobiography di J.S. Mill, pubblicata postuma nel 1873, apparse a molti come un freddo esercizio intellettuale, il resoconto del severo processo di educazione cui l’autore fu sottoposto dal padre James Mill. La pubblicazione a distanza di decenni dell’early draft di quel testo ha permesso di focalizzare meglio le circostanze in cui l’opera fu concepita. Riletto alla luce delle testimonianze coeve, in particolare il carteggio con la moglie Harriet Taylor e il diario composto da Mill nei primi mesi del 1854, (...) l’abbozzo dell’Autobiography apre nuove prospettive per inquadrare i saggi della maturità di Mill sull’etica, la religione e la società. (shrink)

Mill’s feminism has been the object of many discussions, from the publication of The Subjection of women onward, especially among feminist theory. In this article, my aim is to join the critical assessment of Mill’s feminism by considering it in regard of Harriet Taylor’s own feminist creeds. To do so, I’ll first highlight the importance of women’s emancipation in Mill’s work, as well as the boldness of his defense of women’s equality. Then, I’ll endeavor to show that despite his (...) genuine commitment to women’s social, moral, and political emancipation, his feminism is still shaped by sexist biases, especially regarding women’s part in the family and maternity. I’ll then by able to argue that reading Mill and Taylor together allows to contend that Mill’s feminism limits cannot be ascribed to the prejudices of his era. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Transformation of Hearts and Minds:Chan Zen-Catholic Approaches to PreceptsHarry L. WellsCatholic and Buddhist priests, monastics, teachers, and community leaders participated in the second of an anticipated four annual dialogues. The series is sponsored by the Dharma Realm Buddhist Association, the San Francisco Zen Center, and the United States Conference of Catholic Bishops (USCCB). The conference took place 4–7 March 2004 at Mercy Center in Burlingame, CA, whose own East-West (...) meditation program, led by Fr. Thomas Hand, celebrated its twentieth anniversary that year. A popular retreat center and home to the Sisters of Mercy of Burlingame, the Center offered participants tree-dotted, spacious grounds and strolling paths, as well as a labyrinth for contemplative walking.Each day began with both Catholics and Buddhists in Mercy Center's Rose Room, a Zen-style meditation space, for an hour of silent meditation in the morning. Catholic liturgy was celebrated in the afternoon in the main chapel, with all participants invited to attend and share prayer and blessings. On the two full days, Friday and Saturday, two sessions of presentations were held each morning, with one session following in the afternoon. Each of the six sessions focused on a position paper, with three papers given from a Buddhist and three from a Christian perspective. Each paper was presented by its authors, followed by two formal responses, one by a Buddhist and one by a Catholic participant. This was in turn followed by an open discussion within the whole group. A minute of silent meditation began and ended each session.The presentations focused on various meanings embraced by the term "precepts" in each tradition. One paper introduced perspectives on Buddhist precepts in three different Buddhist lineages. Another presented six guidelines as "Precepts on the [End Page 155] Mind-Ground" that connect ethical commitments with social engagement. A third paper focused on Bodhisattva practice, which embraces and unifies all sentient beings. On the Christian side, presentations discussed the precepts as signposts on the path that leads away from suffering, as motivations that move us, and as the practice of the presence of God, exemplified by the writings of Brother Lawrence.A glossary prepared by Fr. Francis Tiso helped define Catholic Christian terms for the Buddhist participants in the dialogue. Similarly, a book distributed to all participants by the Dharma Realm Buddhist Association provided background on "Buddhism A–Z." Formal discussion sessions in the evenings, as well as informal talks by the participants while walking outside or in the form of impromptu hallway meetings added to the depth and richness of the dialogue. Some recurring themes were the importance and meaning of a personal teacher in both traditions; another was the "embodiment" of the teachings, the value of teaching through presence. Personal stories and practical experiences offered by individual participants were much appreciated and added poetry and emotion to the headiness of theological discussion.Members of both the Buddhist and the Catholic traditions reported that the encounter with the spiritual practices and beliefs of the other faith provides both affirmation of the familiar and welcome discovery of unexpected riches of the spirit. The next meeting will be held 20–23 January 2005 at the San Francisco Zen Center. The theme will be "Practice: Method and Experience Toward Transformation."Participating in the 2004 dialogue were Rev. Heng Sure (Berkeley Buddhist Monastery), Bishop John C. Wester (Auxiliary Bishop, Archdiocese of San Francisco), Rev. Taigen Dan Leighton (Mountain Source Sangha), Fr. Arthur Kennedy (Secretariat for Ecumenical and Interreligious Affairs, USCCB), Bhikshuni Heng Liang (Dharma Realm Buddhist Association), Dr. Martin Verhoeven (Institute for World Religions), Dr. Ron Epstein (Institute for World Religions), Dr. Snjezana Akpinar (Dharma Realm Buddhist University), Rev. Shosan Victoria Austin (San Francisco Zen Center), Rev. Alan Senauke (Berkeley Zen Center), Jan Chozen Bays (Zen Community of Oregon), Sr. Phyllis D'Anna, SND (Center for the Practice of Applied Spirituality), Fr. Thomas W. Devereaux (Diocese of Santa Rosa), Robert Hale, OSB Cam. (Incarnation Monastery, Berkeley, CA), Thomas Hand, S.J. (Mercy Center, Burlingame, CA), Fr. Rafael Luévano (Diocese of Orange), Deacon Thomas McGowan (Diocese of Oakland), Lorraine Moriarity (St. Vincent de Paul Society of San Mateo County), Fr. Gerry O'Rourke (Archdiocese... (shrink)

George Herbert Mead, one of America’s most important and influential philosophers, a founder of pragmatism, social psychology, and symbolic interactionism, was also a keen observer of American culture and early modernism. In the period from the 1870s to 1895, Henry Northrup Castle maintained a correspondence with family members and with Mead—his best friend at Oberlin College and brother-in-law—that reveals many of the intellectual, economic, and cultural forces that shaped American thought in that complex era. Close friends of John Dewey, Jane (...) Addams, and other leading Chicago Progressives, the author of these often intimate letters comments frankly on pivotal events affecting higher education, developments at Oberlin College, Hawaii, progressivism, and the general angst that many young intellectuals were experiencing in early modern America. The letters, drawn from the Mead-Castle collection at the University of Chicago, were collected and edited by Mead after the tragic death of Henry Castle in a shipping accident in the North Sea. Working with his wife Helen Castle, he privately published fifty copies of the letters to record an important relationship and as an intellectual history of two progressive thinkers at the end of the nineteenth century. American historians, such as Robert Crunden and Gary Cook, have noted the importance of the letters to historians of the late nineteenth century. The letters are made available here using the basic Mead text of 1902. Additional insights into the connection between Mead, John Dewey, Henry and Harriet Castle, and Hawaii’s progressive kindergarten system are provided by the foundation’s executive director Alfred L. Castle. Marvin Krislov, president of Oberlin College, has added additional comments on the importance of the letters to understanding the intellectual relationship that flourished at Oberlin College. Published with the support of the Samuel N. and Mary Castle Foundation. (shrink)