Genetic testing can be used to determine if unexplained fractures in children could have resulted from a predisposition to bone fractures, e.g., osteogenesis imperfecta. However, uncertainty is introduced if a variant of unknown significance is identified. Proper interpretation of VUS in these situations is critical because of its influence on clinical care and in court rulings. This study sought to understand how VUS are interpreted and used by practitioners when there is a differential diagnosis including both osteogenesis imperfecta and non-accidental (...) injury.A 15-question survey was emailed to physicians who requested analysis of two genes, COL1A1 and COL1A2, from the University of Washington from 2005-2013 for patient cases involving suspicion of child abuse.Among the 89 participants, responses differed about when genetic testing should be ordered for osteogenesis imperfecta, who should be consulted about utilization of VUS test results, follow-up procedures, and who should receive the VUS results.There are no clear guidelines for how to interpret and follow up on VUS. In the legal setting, misinterpreted VUS could lead to unintended consequences and deleterious ramifications for family members. The need for better practice guidelines to help promote more equitable handling of these sensitive legal cases is clear. (shrink)

In the classic study Little science, big science (New York: Columbia University Press, 1963), Derek Price traces the historical shift from what he calls little science?exemplified by early?modern ?invisible colleges? of scientific amateurs and enthusiasts engaged in small?scale, informal interactions and personal correspondence?to 20th?century big science, dominated by professional scientists and wealthy institutions, where scientific information (primarily in print form and its analogues) was mass?produced, marketed and circulated on a global scale. This article considers whether the growing use of more (...) participatory, interactive ?Web 2.0? technologies and social media in science today (e.g. wikis, blogs, tagging and bookmarking, conferencing, etc.) may signal a revival of little science modes of communication that contrast with big science conventions that continue to dominate research policy, scientific institutions, and the publishing industry. A brief historical review of responses to the scientific ?information explosion? since the early 1900s is presented, with a particular focus on the idealization of large?scale, automated information systems and the privileging of formal (document?producing) over informal (interpersonal) modes of scientific communication. Alternative frameworks for scientific communication that incorporate both documents and interaction are used to examine contemporary examples of so?called Science 2.0 and citizen science projects to determine whether such projects indicate the emergence of new modes of communication in science that bridge the immediacy and involvement of invisible colleges and the rigor of peer?reviewed publishing. The implications for traditional documentary forms such as the journal article are also discussed. (shrink)

In “Mama’s Baby, Papa’s Maybe: An American Grammar Book,” Hortense Spillers draws a parallel between the discursive and material field of violence that assisted in the production of the captive body. She asks: “We might well ask if this phenomenon of marking and branding actually ‘transfers’ from one generation to another, finding its various symbolic substitutions in an efficacy of meanings that repeat the initiating moments?” In response to her inquiry, this paper presents a theory of “transfer” of hieroglyphics from (...) one generation to another through a semiological reading of language and myth. This theory of “transfer” will ultimately argue that because language must be iterable, and thus communicable in different contexts, black time is structured by both continuity and severe disjunctures that perform a series of symbolic substitutions for use outside of their initiating moments. (shrink)

Ethical consumption is on the rise, however little is known about the degree and the implications of the sometime conflicting sets of values held by the broad category of consumers who report consuming ethically. This paper explores convergence and divergence of ethical consumption values through a study of organic, fair trade, and local food consumers in Colorado. Using survey and focus group results, we first examine demographic and attitudinal correlates of ethical consumption. We then report evidence that while many organic, (...) fair trade, and local food consumers converge around similar values, some Colorado consumers support only local food, while opposing the consumption of organic and fair trade products. Next, we investigate how ethical consumers who converge and diverge frame their commitment to consuming ethically. The discussion and conclusion suggest that community development planners of projects that focus on ethical consumption will need to successfully traverse issues stemming from convergence and divergence to enjoy long-term sustained success. (shrink)

The Global Burden of Disease Study is one of the largest-scale research collaborations in global health, producing critical data for researchers, policy-makers, and health workers about more than 350 diseases, injuries, and risk factors. Such an undertaking is, of course, extremely complex from an empirical perspective. But it also raises complex ethical and philosophical questions. In this volume, a group of leading philosophers, economists, epidemiologists, and policy scholars identify and discuss these philosophical questions. Better appreciating the philosophical dimensions of a (...) study like the GBD can make possible a more sophisticated interpretation of its results, and it can improve epidemiological studies in the future, so that they are better suited to produce results that help us to improve global health. (shrink)

BackgroundCritical public health measures implemented to mitigate the spread of the novel coronavirus disease (COVID-19) pandemic have disrupted health research worldwide, including HIV prevention research. While general guidance has been issued for the responsible conduct of research in these challenging circumstances, the contours of the dueling COVID-19 and HIV/aids pandemics raise some critical ethical issues for HIV prevention research. In this paper, we use the recently updated HIV Prevention Trials Network (HPTN) Ethics Guidance Document (EGD) to situate and analyze key (...) ethical challenges related to the conduct of HIV prevention research during the COVID-19 pandemic as well as identify potential areas for refinement of the guidance document based on this unprecedented state of affairs.Main bodyNecessary actions taken for HIV prevention research studies due to the COVID-19 pandemic involve an array of ethical issues including those related to: (1) risk mitigation; (2) behavior change; (3) compounding vulnerability; (4) community engagement; (5) trial reopening; and 6) shifting research priorities.ConclusionsIn the context of the dueling HIV and COVID-19 global pandemics, research teams and sponsors must be nimble in responding to the rapidly changing environment by being sensitive to the associated ethical issues. The HTPN EGD provides a rich set of tools to help identify, analyze and address many of these issues. At the same time, future refinements of the HPTN EGD and other research ethics guidance could be strengthened by providing explicit advice regarding the ethical issues associated with disrupted research and the reopening of studies. In addition, additional consideration should be given to appropriately balancing domains of risk (e.g., physical versus social), addressing the vulnerability of research staff and community partners, and responding to un-anticipatable ancillary care needs of participants and communities. Appropriately addressing these issues will necessitate conceptual work, which would benefit from the careful documentation of the actual ethical issues encountered in research, the strategies implemented to overcome them, and their success in doing so. Throughout all of these efforts, it is critical to remember that the HIV pandemic not be forgotten in the rush to deal with the COVID-19 pandemic. (shrink)

Bioethicists influence practices and policies in medicine, science, and public health. However, little is known about bioethicists’ views. We recently surveyed 824 U.S. bioethicists on a wide range of ethical issues, including topics related to abortion, medical aid in dying, and resource allocation, among others. We also asked bioethicists about their demographic, religious, academic, and professional backgrounds. We find that bioethicists’ normative commitments predict their views on bioethical issues. We also find that, in important ways, bioethicists’ views do not align (...) with those of the U.S. public: for instance, bioethicists are more likely than members of the public to think abortion is ethically permissible but are less likely to believe compensating organ donors is. Our demographic results indicate the field of bioethics is far less diverse than the U.S. population—less diverse even than other academic disciplines—suggesting far more work needs to be done to build an inclusive field. (shrink)

ABSTRACTCrying is often considered to be a positive experience that benefits the crier, yet there is little empirical evidence to support this. Indeed, it seems that people hold a range of appraisals about their crying, and these are likely to influence the effects of crying on their emotional state. This paper reports on the development and psychometric validation of the Beliefs about Crying Scale, a new measure assessing beliefs about whether crying leads to positive or negative emotional outcomes in individual (...) and interpersonal contexts. Using 40 preliminary items drawn from a qualitative study, an exploratory factor analysis with 202 participants yielded three subscales: Helpful Beliefs, Unhelpful-Individual Beliefs, and Unhelpful-Social Beliefs, explaining 60% of the variance in the data. Confirmatory factor analysis on the 14-item scale with 210 participants showed a good fit to the three factors. The subscales showed differential... (shrink)

Public education is not just a way to organise and fund education. It is also the expression of a particular ideal about education and of a particular way to conceive of the relationship between education and society. The ideal of public education sees education as an important dimension of the common good and as an important institution in securing the common good. The common good is never what individuals or particular groups want or desire, but always reaches beyond such particular (...) desires towards that which societies as a whole should consider as desirable. This does, of course, put the common good in tension with the desires of individuals and groups. Neo-liberal modes of governance have, over the past decades, put this particular educational set up under pressure and have, according to some, eroded the very idea of the common good. This set of contributions reflects on this state of affairs, partly through an exploration of the idea of publicness itself – how it can be rearticulated and regained – and partly through reflections on the current state of education in the ‘north’ and the ‘south.’. (shrink)

Journal of Political Philosophy, EarlyView.

Background: Legislation on physician-assisted suicide is being considered in a number of states since the passage of the Oregon Death With Dignity Act in 1994. Opinion assessment surveys have historically assessed particular subsets of physicians.Objective: To determine variables predictive of physicians’ opinions on PAS in a rural state, Vermont, USA.Design: Cross-sectional mailing survey.Participants: 1052 physicians licensed by the state of Vermont.Results: Of the respondents, 38.2% believed PAS should be legalised, 16.0% believed it should be prohibited and 26.0% believed it should (...) not be legislated. 15.7% were undecided. Males were more likely than females to favour legalisation . Physicians who did not care for patients through the end of life were significantly more likely to favour legalisation of PAS than physicians who do care for patients with terminal illness . 30% of the respondents had experienced a request for assistance with suicide.Conclusions: Vermont physicians’ opinions on the legalisation of PAS is sharply polarised. Patient autonomy was a factor strongly associated with opinions in favour of legalisation, whereas the sanctity of the doctor–patient relationship was strongly associated with opinions in favour of not legislating PAS. Those in favour of making PAS illegal overwhelmingly cited moral and ethical beliefs as factors in their opinion. Although opinions on legalisation appear to be based on firmly held beliefs, approximately half of Vermont physicians who responded to the survey agree that there is a need for more education in palliative care and pain management. (shrink)

Combined oral contraceptives have been demonstrated to have significant benefits for the treatment and prevention of disease. These medications also are associated with untoward health effects, and they may be directly contraceptive. Prescribers and users must compare and weigh the intended beneficial health effects against foreseeable but unintended possible adverse effects in their decisions to prescribe and use. Additionally, those who intend to abide by Catholic teachings must consider prohibitions against contraception. Ethical judgments concerning both health benefits and contraception are (...) approached in this essay through an overview of the therapeutic, prophylactic, untoward, and contraceptive effects of COC and discussion of magisterial and traditional Catholic teachings from natural law. Discerning through the principle of double effect, proportionate reason, and evidence gathered from the sciences, medical and moral conclusions are drawn that we believe to be fully compliant with good medicine and Catholic teaching. (shrink)

Confabulation is typically understood to be dysfunctional. But this understanding neglects the phenomenon’s potential benefits. In fact, we think that the benefits of non-clinical confabulation provide a better foundation for a general account of confabulation. In this paper, we start from these benefits to develop a social teleological account of confabulation. Central to our account is the idea that confabulation manifests a kind of willful ignorance. By understanding confabulation in this way, we can provide principled explanations for the difference between (...) clinical and non-clinical cases of confabulation and the extent to which confabulation is rational. (shrink)

These essays engage Jin Y. Park’s recent translation of the work of Kim Iryŏp, a Buddhist nun and public intellectual in early twentieth-century Korea. Park’s translation of Iryŏp’s Reflections of a Zen Buddhist Nun was the subject of two book panels at recent conferences: the first a plenary session at the annual meeting of the Society for Asian and Comparative Philosophy and the second at the Eastern Division of the American Philosophical Association on a group program session sponsored by the (...) International Society for Buddhist Philosophy. This exchange also includes a response from Park. (shrink)

Most public and non-profit organisations that fund health research provide the majority of their funding in the form of grants. The calls for grant applications are often untargeted, such that a wide variety of applications may compete for the same funding. The grant review process therefore plays a critical role in determining how limited research resources are allocated. Despite this, little attention has been paid to whether grant review criteria align with widely endorsed ethical criteria for allocating health research resources. (...) Here, we analyse the criteria and processes that ten of the largest public and non-profit research funders use to choose between competing grant applications. Our data suggest that research funders rarely instruct reviewers to consider disease burden or to prioritise research for sicker or more disadvantaged populations, and typically only include scientists in the review processes. This is liable to undermine efforts to link research funding to health needs. (shrink)

In “Beat the (Backward) Clock,” we argued that John Williams and Neil Sinhababu’s Backward Clock Case fails to be a counterexample to Robert Nozick’s or Fred Dretske’s Theories of Knowledge. Williams’ reply to our paper, “There’s Nothing to Beat a Backward Clock: A Rejoinder to Adams, Barker and Clarke,” is a further attempt to defend their counterexample against a range of objections. In this paper, we argue that, despite the number and length of footnotes, Williams is still wrong.

_Cultures and Identities in Transition_ returns to the roots of analytical psychology, offering a thematic approach which looks at personal and cultural identities in relation to Jung’s own identity and the identities of contemporary Jungians. The book begins with two clinical studies, representing a meeting point between the traditional praxis of Jungian analysis, on the one side, and the current zeitgeist, world events and collective anxieties as impacting on persons in therapy, on the other. An international range of expert contributors (...) go on to discuss topics including: issues of national and personal identity – looking back to a shared history and forward to novel applications of Jungian ideas. Jung’s cross-disciplinary dialogues with Victor White. what the designation "Jungian" actually means. Based on papers given at the joint IAAP and IAJS conference held in Zurich in 2008, this book will be essential reading for all Jungians. (shrink)

We sometimes fail unwittingly to do things that we ought to do. And we are, from time to time, culpable for these unwitting omissions. We provide an outline of a theory of responsibility for unwitting omissions. We emphasize two distinctive ideas: (i) many unwitting omissions can be understood as failures of appropriate vigilance, and; (ii) the sort of self-control implicated in these failures of appropriate vigilance is valuable. We argue that the norms that govern vigilance and the value of self-control (...) explain culpability for unwitting omissions. (shrink)

Many consumers are motivated to attend Farmers’ Markets because of the opportunity to purchase fresh and local products. The subsequent interactions at FMs provide an important pathway for the direct exchange of information. While previous research suggests that people value local food and the FM shopping experience and that purchasing directly from producers can lead to transformative learning, little is known about exactly how the shopping experience at FMs can influence consumer purchasing behavior. This study examines the extent of and (...) mechanism for such “influencing.” Using data from surveys, observations, and interviews gathered at six FMs, we analyze the interactions between consumers and vendors, including the motivations and values of both parties. We explore the question, “How do farmers’ markets facilitate change in consumer purchasing behavior?” We propose that the dynamic of change in consumer purchasing behavior at FMs takes root in the exchange of information between consumers and vendors during interactions. Our results suggest that there are three specific characteristics shared by FM consumers and vendors that lead to these meaningful interactions at FMs: symmetry of motivations to attend FMs, shared values, and mutual dependence on interactions. Then, when a consumer learns new information from a FM vendor during an interaction, the consumer is more likely to make a change in their immediate purchase. Information about the products for sale and the modes of production of those items can especially impact consumers’ immediate purchases at FMs. We found that FM interactions can also impact long-term purchasing behavior, such as purchasing more organic or locally produced foods. Our results suggest that FM interactions may have significant implications for consumer health, local economies, and the environment. (shrink)

BackgroundThe Pacific Islander population is the second fasting growing population in the United States and Arkansas is home to the largest Marshallese population in the continental US. The Marshal...

The vast majority of health research resources are used to study conditions that affect a small, advantaged portion of the global population. This distribution has been widely criticized as inequitable and threatens to exacerbate health disparities. However, there has been little systematic work on what individual health research funders ought to do in response. In this article, we analyze the general and special duties of research funders to the different populations that might benefit from health research. We assess how these (...) duties apply to governmental, multilateral, nonprofit, and for-profit organizations. We thereby derive a framework for how different types of funders should take the beneficiaries of research into account when they allocate scarce research resources. (shrink)

This edition is not an OCR or a photocopy. It is a new edition.

(Re)presentations of evil in media, philosophy and literature -- The dangerous ones : when evil was a woman -- Space/times of evil : political life and social worlds.

This article tells the story of the oil and gas origins of the Gaia hypothesis, the theory that the Earth is a homeostatic system. It shows how Gaia’s key assumption—that the climate is a fundamentally stable system, able to withstand perturbations—emerged as a result of a collaboration between the theory’s progenitor, James Lovelock, and Royal Dutch Shell in response to Shell’s concerns about the effects of its products on the climate. The article explains how Lovelock elaborated the Gaia hypothesis and (...) gave it evidential depth through a series of Royal Dutch Shell-funded research projects meant to identify organisms whose biological activities might double as climate-regulating mechanisms. The article goes on to show how this research subsequently laid the foundation for a distinct genre of climate change denialism, in which corporations sowed doubt not by denying the phenomenon of global warming but by naturalizing it. (shrink)

The need for greater privacy protections in the United States has never been greater. In their work, “Ethical Responsibilities for Companies That Process Personal Data”, McCoy et al. (2023) correct...

Gene therapies to treat sickle cell disease are in development and are expected to have high costs. The large eligible population size — by far, the largest for a gene therapy — poses daunting budget challenges and threatens to exacerbate health disparities for Black patients, who make up the vast majority of American sickle cell patients.

The authors respond to a letter by Mitchell Berger in the March‐April 2024 issue of the Hastings Center Report concerning their essay “Securing the Trustworthiness of the FDA to Build Public Trust in Vaccines.”.