Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

Janet E. Smith; I Knit You in Your Mother's Womb, Christian bioethics: Non-Ecumenical Studies in Medical Morality, Volume 8, Issue 2, 1 January 2002, Pages 125–.

Cowdin and Tuohey argue for a rethinking of Catholic bioethical principles and the Church's moral authority. Citing the Second Vatican council for support, they argue that if the Church were to respect the proper autonomy of medicine, it would allow sterilizations. In this essay I argue against Cowdin and Tuohey's understanding that the Church has derived its moral laws independent of consultation with medicine and that it treats medicine simply as a source of technical expertise. I also argue that they (...) misunderstand the nature of autonomy as well as the Church's position regarding the type of autonomy they request for medicine. I will especially argue against their understanding of the principles of totality and double effect as “dispensations” from the moral order. I conclude that they have provided no grounds to cause the Church to reconsider its condemnation of all sterilizations. (shrink)

This response challenges Jensen's analysis in no substantial way. Rather, it explains more fully some of the moral character categories that Aristotle provides. It argues that Aristotle understood there to be two forms of continence: the continence that enables us to control natural appetites and “some form” of continence directed towards unnatural appetites, generally engendered by some pathology or abuse.

My assessment of Jean Porter's Natural and Divine Law is mixed. She provides a generally accurate account of the scholastic theory of natural law, since she steers clear of the erroneous notion that its understanding of "nature" was confined to the physical or biological and rightly notes that "nature" refers to the fullness of human nature. Her account of modern natural law theory is less reliable; for she ignores the work of several prominent contemporary natural law theorists and regrettably caricatures (...) the natural law theory employed in Church documents. I found most illuminating her claims that biblical themes influenced which issues became the focus of scholastic natural law. Her entire project, however, is flawed in serious ways: 1) surprisingly, in light of her previous work, she neglects nearly entirely the role of virtue in natural law theory; and 2) the trajectory of her work is designed to lead the Church to change its teaching on sexuality, even to the point of claiming that scholastic natural law theory has principles that justify homosexual celebrating of the erotic in the gay lifestyle. (shrink)

It is possible to defend the Church’s teaching that contraception is incompatible with God’s plan for sexuality in many different ways. This essay sketches the fundamental views of reality common to all the defenses and the main lines of the most prominent defenses, some based on natural law, on the theology of the body, and on the physical, psychological, and social consequences of the use of contraception. While all the defenses have merit, the argument based on the recognition that sexual (...) intercourse is meant to be a complete self-gift has a special power of its own. (shrink)

Fundamentals -- Beginning-of-life issues -- Reproductive technologies -- Contraception, sterilization, and natural family planning -- End-of-life issues -- Cooperation with evil -- Respect for the body -- The ten commandments for health care professionals and patients.

Foreword by Robert H. Bork -- Culture wars -- A distorted understanding of rights -- The right to privacy -- Griswold and contraception -- Roe and abortion -- Assisted suicide and homosexuality -- Political connections and natural consequences.

‘Patient satisfaction’: Knowledge for ruling hospital reform — An institutional ethnography Driven by funding restraint, Canadian health‐care has undergone over a decade of significant reform. Hospitals are being restructured, as text‐based practices of accountability bring a new business‐orientation into hospital and clinical management. New forms of knowledge, generated through records of various sorts, are a necessary resource for managing care in the new environment. This paper's research uses Canadian sociologist Dorothy E. Smith's institutional ethnographic methodology to critically analyse one (...) instance of text‐based management. I analyse information about ‘patient satisfaction’ as it is generated through a patient survey (in which I was implicated through my involvement with a hospitalized family member). Subsequently, I have studied the management environment into which that information would be entered. I argue that in the instance analysed, the information becomes part of a dominant consumer oriented healthcare discourse that subordinates concerns about ‘what actually happened’ as a professional caregiver would have known it. On this basis, I contend that this sort of taken‐for‐granted approach to making decisions about quality care in hospitals may be seriously, even dangerously, flawed. (shrink)

Some decades ago in his intriguing book on Jonathan Edwards, Perry Miller used to great effect the device of supposing a two-fold biography of Edwards, an external one consisting of the historical record embracing the major events of his life and times, and an internal one aimed at an interpretation of the mind of Edwards and the development of his thought.

There is an undercurrent to be detected in Anselm's record of the meditative experience that issued in the Ontological Argument and, although it points to a profound and perennial problem in the interpretation of religion, this undercurrent has been largely ignored. The Argument, as is well known, moves entirely within the medium of reflective meaning focused on the idea of God and, unlike the cosmological arguments of later theologians, it makes no appeal whatever to a principle of causality or to (...) the discovery of a sufficient reason for finite existence. Anselm seems to have had his own sense of what one may call the unadulterated rationalism of the Argument when, in his own words, he wondered, ‘if perhaps it might be possible to find one single argument that for its proof required no other save itself, and that by itself would suffice to prove that God really exists’. Here we are entirely within that inner chamber of the mind so dear to the Augustinian tradition, a mind from which one is to exclude all thought save that of God. The task of the one who reflects is to penetrate the inner meaning of this thought in order to discover what it implies beyond what is evident on the surface. With such an eminently rational or logical aim occupying the centre of attention, it is quite understandable that the presence of another, and quite opposed, concern should have been overlooked - Anselm's concern, namely, to transcend, as it were, the medium of thought itself, and enter into the presence of God. The reason that this concern introduces a tension in the search for a proof is that the realization of presence would seem to render proof superfluous, while the inference in an argument - especially one moving towards existence – inevitably suggests, in some sense and to some degree, the absence of what is sought for. (shrink)

Janet E. Buerger uses this remarkable collection of images to produce a cultural history of the daguerreotype's most learned following—an elite group of mid-nineteenth-century intellectuals who sought to understand and develop the ...

The United Nations Convention on the Rights of Persons with Disabilities, adopted on December 13, 2006, and entered into force on May 3, 2008, constitutes a key landmark in the emerging field of global health law and a critical milestone in the development of international law on the rights of persons with disabilities. At the time of its adoption, the U.N. High Commissioner for Human Rights heralded the CRPD as a rejection of the understanding of persons with disabilities “as objects (...) of charity, medical treatment and social protection” and an embrace of disabled people as “subjects of rights.”The text of the Convention itself, and the highly participatory process by which it was negotiated, signal a definitive break from previous international approaches that focused on disability within a medical model framework. In contrast to traditional approaches, the CRPD embraces a social model of disability, concentrating the disability experience not in individual deficiency, but in the socially constructed environment and the barriers that impede the participation of persons with disabilities in society. (shrink)

This article reviews the contributions of the UN Convention on the Rights of Persons with Disabilities to the progressive development of both international human rights law and global health law and governance. It provides a summary of the global situation of persons with disabilities and outlines the progressive development of international disability standards, noting the salience of the shift from a medical model of disability to a rights-based social model reflected in the CRPD. Thereafter, the article considers the Convention's structure (...) and substantive content, and then analyzes in specific detail the particular contributions of the Convention to health and human rights law and global health governance. It concludes with an exploration of the potential implications of the CRPD's innovations for some of the most pressing issues in global health governance, including the Convention's contributions to the principle of participation in decision-making. (shrink)

Journalists play an important role in the realization and protection of human rights worldwide, framing and shaping the public’s understanding of issues. In the United States, however, studies show that media coverage of human rights is inadequate and frequently inaccurate, with US journalists typically framing human rights as an exclusively international issue. This study helps to explain why this is the case through an examination of the human rights content of journalism education in the United States. Journalism education is dominated (...) by undergraduate programs in the United States, yet data from this study show that human rights education is not part of journalism training programs at the undergraduate level and is not a focus of most graduate-level training programs. Those schools that do teach human rights do so largely with a focus on events and violations abroad. The fact that journalists are not educated about international human rights law and standards or taught to view events through a human rights lens means that crucial opportunities are missed to frame topics as human rights issues, to inform the public, and to hold governments and other human rights violators accountable. (shrink)

The multifaceted work of the late Susan Leigh Star is explored through a selection of her writings and essays by friends and colleagues. Susan Leigh Star (1954–2010) was one of the most influential science studies scholars of the last several decades. In her work, Star highlighted the messy practices of discovering science, asking hard questions about the marginalizing as well as the liberating powers of science and technology. In the landmark work Sorting Things Out, Star and Geoffrey Bowker revealed the (...) social and ethical histories that are deeply embedded in classification systems. Star's most celebrated concept was the notion of boundary objects: representational forms—things or theories—that can be shared between different communities, with each holding its own understanding of the representation. Unfortunately, Leigh was unable to complete a work on the poetics of infrastructure that further developed the full range of her work. This volume collects articles by Star that set out some of her thinking on boundary objects, marginality, and infrastructure, together with essays by friends and colleagues from a range of disciplines—from philosophy of science to organization science—that testify to the wide-ranging influence of Star's work. Contributors Ellen Balka, Eevi E. Beck, Dick Boland, Geoffrey C. Bowker, Janet Ceja Alcalá, Adele E. Clarke, Les Gasser, James R. Griesemer, Gail Hornstein, John Leslie King, Cheris Kramarae, Maria Puig de la Bellacasa, Karen Ruhleder, Kjeld Schmidt, Brian Cantwell Smith, Susan Leigh Star, Anselm L. Strauss, Jane Summerton, Stefan Timmermans, Helen Verran, Nina Wakeford, Jutta Weber. (shrink)

In this article I argue that evolutionary psychological strategies for making inferences about present-day human psychology are methodologically unsound. Evolutionary psychology is committed to the view that the mind has an architecture that has been conserved since the Pleistocene, and that our psychology can be fruitfully understood in terms of the original, fitness-enhancing functions of these conserved psychological mechanisms. But for evolutionary psychological explanations to succeed, practitioners must be able to show that contemporary cognitive mechanisms correspond to those that were (...) selected for in the environment of evolutionary adaptedness, that these present-day cognitive mechanisms are descended from the corresponding ancestral mechanisms, and that they have retained the functions of the ancestral mechanisms from which they are descended. I refer to the problem of demonstrating that these conditions obtain as “the matching problem,” argue that evolutionary psychology does not have the resources to address it, and conclude that evolutionary psychology, as it is currently understood, is therefore impossible. (shrink)