Meaningful participant engagement has been identified as a key contributor to the success of efforts to share data via a “Medical Information Commons”. We present findings from expert stakeholder interviews aimed at understanding barriers to engagement and the appropriate role of MIC participants. Although most interviewees supported engagement, they distinguished between individual versus collective forms. They also noted challenges including representation and perceived inefficiency, prompting reflection on political aspects of engagement and efficiency concerns.

Apoptosis is now widely recognized as a common form of cell death and represents a mechanism of cell clearance in many physiological situations where deletion of cells is required. Peptide growth factors, initially characterised as stimulators of cell proliferation, have now been shown to inhibit death in many cell types. Deprivation of growth factors leads to the induction of apoptosis, i.e. condensation of chromatin and degradation in oligonucleosomesized fragments, formation of plasma and nuclear membrane blebs and cell fragmentation into apoptotic (...) bodies which can be taken up by neighbouring cells. Here we discuss the mechanism(;s) by which growth factors may inhibit apoptosis. (shrink)

Making data broadly accessible is essential to creating a medical information commons. Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.

Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.

Este artigo objetivou investigar a síndrome de burnout em estudantes de um curso técnico de enfermagem. Procurou identificar também a existência de associação entre variáveis demográficas e escolares e fatores de estresse numa amostra de 255 estudantes. Como instrumentos de pesquisa foi utilizado um..

_Everyday Life and the Sacred_ offers gender sensitive interdisciplinary perspectives from the fields of feminist theology and religious studies on the everyday and the sacred. The volume aims to re-configure the current domain of religion and gender studies.

_Everyday Life and the Sacred_ offers gender sensitive interdisciplinary perspectives from the fields of feminist theology and religious studies on the everyday and the sacred. The volume aims to re-configure the current domain of religion and gender studies.

With growing concerns over children's suggestibility and how it may impact their reliability as witnesses, there is increasing interest in determining the long-term effects of induced memories. The goal of the present research was to learn whether source misattributions found by Ceci, Huffman, Smith, and Loftus caused permanent memory alterations in the subjects tested. When 22 children from the original study were reinterviewed 2 years later, they recalled 77% of all true events. However, they only consented to 13% of all (...) false events, compared to the 22% false consent rate found by Ceci et al. . Additionally, while children remained accurate in their recall of true events , they “recanted” their earlier false consents 77% of the time, after the 2-year delay. Implications of these findings for child witnesses and the legal system are discussed. (shrink)

We applaud Ray and Cooper (2024) for emphasizing environmental health as a bioethics issue. As a team of interdisciplinary pediatric researchers and providers who are part of an institutional clima...

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Proceedings of a forum held in Austin, Tex., on Mother's Day, 1996.

This is a report on the Doctoral Consortium co-located with the 17th International Conference on Artificial Intelligence and Law in Montreal.

A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.

A medical information commons is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.

In this paper, we consider three arguments for the irrelevance of the doctrine of double effect in end-of-life decision making. The third argument is our own and, to that extent, we seek to defend it. The first argument is that end-of-life decisions do not in fact shorten lives and that therefore there is no need for the doctrine in justification of these decisions. We reject this argument; some end-of-life decisions clearly shorten lives. The second is that the doctrine of double (...) effect is not recognized in UK law ; therefore, clinicians cannot use it as the basis for justification of their decisions. Against this we suggest that while the doctrine might have dubious legal grounds, it could be of relevance in some ways, e.g. in marking the boundary between acceptable and unacceptable practice in relation to the clinician's duty to relieve pain and suffering. The third is that the doctrine is irrelevant because it requires there to be a bad effect that needs justification. This is not the case in end-of-life care for patients diagnosed as dying. Here, bringing about a satisfactory dying process for a patient is a good effect, not a bad one. What matters is that patients die without pain and suffering. This marks a crucial departure from the double-effect doctrine; if the patient's death is not a bad effect then the doctrine is clearly irrelevant. A diagnosis of dying allows clinicians to focus on good dying and not to worry about whether their intervention affects the time of death. For a patient diagnosed as dying, time of death is rarely important. In our conclusion we suggest that acceptance of our argument might be problematic for opponents of physician-assisted death. We suggest one way in which these opponents might argue for a distinction between such practice and palliative care; this relies on the double-effect doctrine's distinction between foresight and intention. (shrink)

This paper reports a literature review on the topic of ethical issues in in-depth interviews. The review returned three types of article: general discussion, issues in particular studies, and studies of interview-based research ethics. Whilst many of the issues discussed in these articles are generic to research ethics, such as confidentiality, they often had particular manifestations in this type of research. For example, privacy was a significant problem as interviews sometimes probe unexpected areas. For similar reasons, it is difficult to (...) give full information of the nature of a particular interview at the outset, hence informed consent is problematic. Where a pair is interviewed (such as carer and cared-for) there are major difficulties in maintaining confidentiality and protecting privacy. The potential for interviews to harm participants emotionally is noted in some papers, although this is often set against potential therapeutic benefit. As well as these generic issues, there are some ethical issues fairly specific to in-depth interviews. The problem of dual role is noted in many papers. It can take many forms: an interviewer might be nurse and researcher, scientist and counsellor, or reporter and evangelist. There are other specific issues such as taking sides in an interview, and protecting vulnerable groups. Little specific study of the ethics of in-depth interviews has taken place. However, that which has shows some important findings. For example, one study shows participants are not averse to discussing painful issues provided they feel the study is worthwhile. Some papers make recommendations for researchers. One such is that they should consider using a model of continuous (or process) consent rather than viewing consent as occurring once, at signature, prior to the interview. However, there is a need for further study of this area, both philosophical and empirical. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Mary as the Exemplar of the Body's PovertyAngela FranksRecent MariologyFollowing the trajectory of Mariology and Marian devotion for the last century or so is enough to give one whiplash. On the one hand, the declaration of the doctrine of Mary's Assumption in 1950 by Pope Pius XII represents a strand of Mariology that emphasizes her divinely granted prerogatives and glory. In popular piety, this dogmatic emphasis was (...) mirrored by devotional practices that stressed Mary's mediatorial power.1 On the other hand, many theologians were concerned that such teaching and practice obscured the centrality of Christ, the Church, and the liturgy in Christian life.2 One could see the placing of Mary within chapter 8 of Lumen Gentium less than fifteen years after the declaration of the Assumption as a rebalancing of Mariology. Lumen Gentium (LG) resituated Mary within the doctrine of the Church, echoing patristic equations of Our Lady with the Church.3 One unintended effect of the conciliar move, however, was to make devotion to Mary seem unnecessary, despite the efforts of [End Page 1097] post-conciliar popes to encourage Marian piety—in particular, John Paul II, with his Marian motto Totus Tuus.John Paul II is in many ways an exemplar of conciliar Marian devotion. His Mariology integrates Mary into ecclesiology by emphasizing her role as the paradigmatic follower of Christ.4 This discipleship is, he is careful to say, due to her maternal role and the extraordinary graces that followed from it.5 But these graces did not eliminate her need to follow her son closely; rather, they made such discipleship possible.This interplay between Mary's need and the unique graces granted to meet that need is perhaps clearest in John Paul II's presentation of Mary's faith.6 This attitude of faith is "central" to John Paul II's presentation of Mary in the encyclical Redemptoris Mater (RM), according to Joseph Ratzinger.7 Because of her faith, which is based on the prior action of God in her life (§38, quoting LG §60), she is due "a wealth of praise" that "is more than ever necessary today" (RM §34). In John Paul II, the seeming either-or of twentieth-century Mariology is dissolved, but through the introduction of a causal relationship between the two. In other words, [End Page 1098] Mary's poverty—her need for and receptivity to God—is what makes her able to be rich, to be worthy of a wealth of praise.Perhaps surprisingly, John Paul Il's presentation of Mary as transparent to the mystery of Christ echoes his theology of the body. There, he repeats a hylomorphic maxim: "The body reveals the person." In this revelation, the poverty and the wealth of the body coincide. The body is of great dignity: it can reveal the person. But it is also poor, because it does not reveal itself but rather is transparent to the inner personal mystery. In this, it resembles Mary.This essay will pick up the trail laid down by John Paul II by examining Mary under the rubric of her poverty. Her poverty, I will argue, is exemplary for the poverty of the body, and neither Mary nor the body can be understood properly without understanding poverty. In this essay, I will explore these topics by looking at the Mariology of John Paul II and Hans Urs von Balthasar, before turning to what this Mariology means for the body and for creation in general.Mary's PovertyRedemptoris Mater presents Mary as a model of pilgrim faith, one who "goes before" us on the pilgrimage (RM §§5–6 and 25–28). Mary's reliance upon faith places her among the anawim, the poor of the Lord. John Paul II quotes §55 of Lumen Gentium to note that Mary "stands out among the poor and humble of the Lord, who confidently await and receive salvation from him" (RM §§8 and 11). As the Congregation for the Doctrine of the Faith under Joseph Ratzinger wrote around the time of the Marian encyclical, she is "totally dependent upon God and completely directed towards him, and at the side of her Son, she is... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:The Rights of Women: Reclaiming a Lost Vision by Erika BachiochiAngela KnobelThe Rights of Women: Reclaiming a Lost Vision by Erika Bachiochi (Notre Dame, IN: University of Notre Dame Press, 2021), 422 pp.Erika Bachiochi's The Rights of Women is animated by a clear vision: a vision of men and women as possessors of the same nature and engaged in the same shared enterprise. Men and women possess the (...) same nature because they are rational animals and hence fulfilled by living a life that exhibits the fullness of their rational human nature, and they are engaged in the same enterprise because both naturally pursue the same good: the common good of their families and societies. Bachiochi argues that this Aristotelian and communitarian understanding of the relationship between the sexes was the original vision of feminism: it was the vision of the early feminist Mary [End Page 742] Wollenstonecraft, and likewise the vision that inspired and animated our nation's founding mothers. As feminism's most famous advocates began to adopt the language of the Enlightenment and its incoherent emphasis on "rights," however, Wollenstonecraft's robust and sensible understanding of the right relationship between the sexes was gradually left behind. Modern feminism, Bachiochi argues, needs to reclaim Wollenstonecraft's vision, and has indeed already begun to do so in the communitarian and dignitarian work of Mary Ann Glendon.As is evident from the preceding, there are three distinct claims advanced in Bachiochi's book. First—and this I take to be the overarching thesis of the book—there is a claim about how feminism ought to understand the relationship between the sexes (i.e., in terms of Aristotelian flourishing and natural law). Second, there is the claim that feminism originally did understand the relationship between the sexes in this way. Finally (this is the third thesis), there is the claim that modern feminists have lost this vision, and that the solution to our current woes is to reclaim it. It is important to notice that truth of the first thesis does not depend on the truth of the second or the third, or vice versa. Because the first thesis is to my mind the most interesting and important of the three, it will be the focus of my remarks here. But it is worth making a few brief remarks about the other two theses, if only because so much of the book's content is devoted them.Did early feminists have a clear vision of the right relationship between the sexes, a vision informed by Aristotle and natural law? Did later feminists discard that clear vision? Is Enlightenment philosophy to blame? This is a common narrative, particularly in pro-life circles, and I think there is certainly an element of truth to it. I think Bachiochi rightly recognizes an Aristotelian strain in Wollenstonecraft, and rightly applauds the early feminist advocacy of virtue. What I am not quite ready to accept, though, is the "clear" part of the clear vision. Early feminists subscribed to many admirable views. They also seem to have held some less admirable ones. However laudable her advocacy of virtue and chastity may have been, for instance, Wollenstonecraft seems to have had a very dim view of men (45). Similarly, I found the "voluntary motherhood" movement, which Bachiochi applauds, repellent. If disharmony between the sexes arose from men having too much control over women's sexual lives, harmony will hardly be restored by reversing the equation and instead giving women complete control over sex (109). My own instinct (which this book only reaffirmed) is to think that feminism as a movement has always been a bit confused, has always had some good goals and some that were less so. I think this, in [End Page 743] part, because I am not sure that a coherent "feminism" is possible. I shall say more about this below.Bachiochi's real claim, of course, is that there is a right way to understand men and women, and consequently a right way to be a feminist. But my genuine appreciation for and affirmation of her view of what the right relationship between the... (shrink)

This paper challenges historians’ portrayal of Elizabethan puritanism as rooted in the Marian exile of 1553-1558, through a fresh examination of three exiles who have been described as early puritans: James Pilkington, John Jewel, and Laurence Humphrey. By studying the value they placed on church unity, this paper brings out the fundamental differences between the early reformers and the later puritans. It also demonstrates that the religious selfidentity of these men pre-dated the accession of Mary. Thus, their exile was (...) a means of strengthening their faith, not finding it, and their return meant that there was more continuity between the Edwardian and Elizabethan churches than is often allowed in current scholarship. (shrink)

Physicists regularly invoke universal laws, such as those of motion and electromagnetism, to explain events. Biological and medical scientists have no such laws. How then do they acquire a reliable body of knowledge about biological organisms and human disease? One way is by repeatedly returning to, manipulating, observing, interpreting, and reinterpreting certain subjects—such as flies, mice, worms, or microbes—or, as they are known in biology, “model systems.” Across the natural and social sciences, other disciplinary fields have developed canonical examples that (...) have played a role comparable to that of biology’s model systems, serving not only as points of reference and illustrations of general principles or values but also as sites of continued investigation and reinterpretation. The essays in this collection assess the scope and function of model objects in domains as diverse as biology, geology, and history, attending to differences between fields as well as to epistemological commonalities. Contributors examine the role of the fruit fly Drosophila and nematode worms in biology, troops of baboons in primatology, box and digital simulations of the movement of the earth’s crust in geology, and meteorological models in climatology. They analyze the intensive study of the prisoner’s dilemma in game theory, ritual in anthropology, the individual case in psychoanalytic research, and Athenian democracy in political theory. The contributors illuminate the processes through which particular organisms, cases, materials, or narratives become foundational to their fields, and they examine how these foundational exemplars—from the fruit fly to Freud’s Dora—shape the knowledge produced within their disciplines. Contributors Rachel A. Ankeny Angela N. H. Creager Amy Dahan Dalmedico John Forrester Clifford Geertz Carlo Ginzburg E. Jane Albert Hubbard Elizabeth Lunbeck Mary S. Morgan Josiah Ober Naomi Oreskes Susan Sperling Marcel Weber M. Norton Wise. (shrink)

A leader in the modern commentary on ethics and philosophy, Mary Warnock casts a critical eye over her life and times.

Fundamental principles : the nature of the dispute -- Types of euthanasia -- Psychiatric assisted suicide -- Neonates -- Incompetent adults -- Human life is sacred -- The slippery slope -- Medical views -- Four methods of easing death and their effect on doctors -- Looking further ahead.

How is hope to be found amid the ethical and political dilemmas of modern life? Writer and philosopher Mary Zournazi brought her questions to some of the most thoughtful intellectuals at work today. She discusses "joyful revolt" with Julia Kristeva, the idea of "the rest of the world" with Gayatri Spivak, the "art of living" with Michel Serres, the "carnival of the senses" with Michael Taussig, the relation of hope to passion and to politics with Chantal Mouffe and Ernesto (...) Laclau. A dozen stimulating minds weigh in with their visions of a better social and political order. The result is a collaboration - of writing, of thinking, and of politics - that demonstrates more clearly than any single-authored project could how ideas encountering one another can produce the vision needed for social change. (shrink)

This chapter first distinguishes between originality and creativity. True originality is rare, whether in art, science, or LEGO, because to be truly original means to have done something that no one has ever done before, and that no one could have anticipated. Most LEGO creations will not meet that condition, for with the exception of serious hobbyists who undertake massive builds, most players who make original creations are making creations that are commonplace. Painting or remolding or placing stickers on the (...) bricks counts against the spirit of LEGO creation. The chapter then discusses The LEGO Movie embodies the paradox that presents three conflicting models of creative LEGO play, illustrated by the Master Builders, Finn's father, and Emmet. The movie's creators were deliberately playing around with conflicting popular conceptions of creativity: creativity as madness, creativity as thinking outside the box, and creativity as vision. (shrink)

This selection consists of extracts from writings of women concerned solely with the pursuit of abstract ideas, historically contextualized. The texts, for the most part, reflect issues widely debated in their contemporary societies. Extracts from lesser-known writers are also included, providing a diversity of arguments spanning four centuries and including some notable contemporary philosophers.

Nature and Mortality is a challenging look at some of the major public issues of our time through the eyes of one of our most influential and probing liberal humanists. It is a frank account on where we stand today on such controversial matters as human embryology, genetic engineering, euthanasia and abortion. Warnock's views may seem like a red rag to a bull to some, but her contribution to the debate is always stimulating. Enlivened by autobiographical anecdote and some delicious (...) side-swipes, Nature and Mortality is Mary Warnock at her most perceptive, wise and entertaining. (shrink)

The works of Mary Wollstonecraft (1759-1797) ranged from the early _Thoughts on the Education of Daughters_ to _The Female Reader_, a selection of texts for girls, and included two novels. But her reputation is founded on _A Vindication of the Rights of Woman_ of 1792. This treatise is the first great document of feminism—and is now accepted as a core text in western tradition. It is not widely known that the germ of Wollstonecraft’s great work came out of an (...) earlier and much shorter vindication—A Vindication of the Rights of Men (1790), written in the context of the issues raised by the French Revolution. This edition, which follows the model of other Broadview Editions in including a range of materials that help the reader to see the work in the context of its era out of which it emerged, is arranged chronologically, opening with Wollstonecraft’s “other vindication.” It also includes a wide range of other documents in appendices, as well as a comprehensive and authoritative introduction, chronology, and full index. (shrink)

The unity of aesthetic and teleological judgment, the third and earlier Critiques, is based on Kant′s discovery of a “heuristic method” for applying judgments regarding sense phenomena to abstract thought, a “second attention” which enables an “idea of the whole”. Synthetic judgment, basis for cognition and human action, depends on efficacy of non-empirical insights: the transcendental standpoint, “regulative” ideas, consciousness of “ought” and the reality of freedom, universality of natural mechanism, the principle of “fortuitous” purposiveness. The activity of reflective judgment (...) in the encounter with the beautiful, sublime, living, and two paradigmatic types of explanation, inspired by Spinoza′s distinction of extensio and cogitatio, permit Kant to bridge the gap between freedom and necessity, theoretical knowledge and morality. (shrink)

All religion and much philosophy has been concerned with the contrast between the ephemeral and the eternal. Human beings have always sought ways to overcome time, and to prove that death is not the end. This book consists then in an exploration of certain closely related ideas: personal identity, time, history and our commitment to the future, and the role of imagination in life.

Science is the study of our world, as it is in its messy reality. Nonetheless, science requires idealization to function—if we are to attempt to understand the world, we have to find ways to reduce its complexity. Idealization and the Aims of Science shows just how crucial idealization is to science and why it matters. Beginning with the acknowledgment of our status as limited human agents trying to make sense of an exceedingly complex world, Angela Potochnik moves on to (...) explain how science aims to depict and make use of causal patterns—a project that makes essential use of idealization. She offers case studies from a number of branches of science to demonstrate the ubiquity of idealization, shows how causal patterns are used to develop scientific explanations, and describes how the necessarily imperfect connection between science and truth leads to researchers’ values influencing their findings. The resulting book is a tour de force, a synthesis of the study of idealization that also offers countless new insights and avenues for future exploration. (shrink)