It is the researcher's responsibility to provide accurate, complete, and unbiased verbal and written information yet, as this essay discusses, challenges to meaningful research consent abound in the communication between researcher and subject. This discussion of these challenges is far from exhaustive, but it will flag some of the potholes that researchers must anticipate on the sometimes rocky road to eliciting meaningful consent. These include, but are not limited to, inadequate scientific literacy, poorly written consent forms, and even the deployment (...) of scientific terms and seductive acronyms like CURE and MIRACL. Studies with acronyms, for example, enroll five times as many patients as those without, are more likely to be published by prestigious journals, and have higher Jadad methodologic quality scores although they are no more likely to conclude with positive findings. Other barriers to researcher-subject communication include: widely differing beliefs and customs, semiotics, socioeconomic status, iatrophobia, and dramatically different histories of treatment in the medical-research arena. (shrink)

Carte Blanche is the alarming tale of how the right of Americans to say "no" to risky medical research is eroding at a time when we are racing to produce a vaccine and treatments for Covid-19. This medical right that we have long taken for granted was first sacrificed on the altar of military expediency in 1990 when the Department of Defense asked for and received from the FDA a waiver that permitted it to force an experimental anthrax vaccine on (...) the ranks of ground troops headed for the Persian Gulf. Since then, the military has pressed ahead to impose nonconsensual testing of the blood substitute PolyHeme in civilian urbanities, quietly enrolling more than 20,000 non-consenting subjects since 2005. Most Americans think that their right to give or withhold consent is protected by law, but the passing in 1996 of modifications to the Code of Federal Regulations, such as statute CFR 21 50.24, now permit investigators to conduct research with trauma victims without their consent or event their knowledge. More than a dozen studies since have used the 1996 loophole to recruit large numbers of subjects without their knowledge. The erosion of consent is the result of a U.S. medical-research system that has proven again and again that it cannot be trusted. (shrink)

Is it unethical to advertise lotteries? Many citizens think that states should not be actively promoting and encouraging the public tospend hard-earned dollars on a bet that they are virtually guaranteed to lose. Perhaps more importantly, business ethicists are concerned that lottery advertising may be targeting the most vulnerable markets: households with the lowest income and education levels. If this were true, then it would increase the already disproportionately large burden of lottery taxes on the poor. Fortunately, our research finds (...) no evidence to support the contention that advertising is responsible for high rates of lottery participation and expenditures by lower income groups or that low-income groups are more affected by advertising than high-income groups. On the contrary, awareness of lottery advertising seems to be associated with a higher probability to play Lotto only for the middle income group. This means that lottery advertising may actually reduce the regressivity of lottery taxes. (shrink)

The novels,Dr. Breen's Practice andDr. Zay provide the twentieth century reader with some interesting and intimate insights into nineteenth century homeopathy as practiced by two women physicians. It becomes apparent after reading these two books that the existing knowledge about women in homeopathic medicine is inadequate to answer the questions that the novels raise. More investigation in this area would help illuminate the motivations women had to enter medicine, as well as their reasons for choosing homeopathy over regular medicine. It (...) would also help us understand the conflicting images we have of women physicians between strident reformer and scientific physician, and what led women like Clemence Lozier and Elizabeth Blackwell to choose one path over (or in addition to) the other.The novels show us that nineteenth century women did have the power to choose difficult paths, that these paths were often very lonely, and that unqualified support for a woman's career was rare, indeed. Until we learn more about particular physicians and the ways they lived their lives, we will not know if these novels were only fiction, or actually did represent reality. (shrink)

What tensions arise between philosophy of religion and theology? What strengths and weaknesses of analytical methods emerge in relation to strongly confessional philosophical theologies, or to Continental philosophies? Faith and Philosophical Analysis evaluates how well philosophy of religion serves in understanding religious faith. Figures who rarely share the space of the same book - leading exponents of analytic philosophy of religion and those who question its legacy - are drawn together in this book, with their disagreements harnessed to positive effect. (...) Figures such as Richard Swinburne and Basil Mitchell reflect on their life-long projects from a perspective which has not previously been seen in print. A wide range of approaches found in contemporary philosophy of religion are explored, including: reformed epistemology, 'traditional' metaphysical theory building, feminist methodologies, Wittgensteinian approaches, and American pragmatism. Considering the trends in philosophy of religion as they are interacting across continents, looking particularly at philosophical influences in North America, Britain, and Continental Europe, this book will appeal to students, scholars and general readers with an interest in philosophy of religion, theology, or analytical philosophy. (shrink)

Women whether at home or at work, are generally more easily hurt by difficult situations and angry words, and are less able to cope with the cut and thrust of life. We were made as complementaly individuals to men and we need their strength, their objectivity and their protection at difficult times. But equally, ourvery sensitiiity and vulnerability makes us more ready to recwnize our need of God and of His daily power and While a man is often too busy (...) to acknowledge his need of a Saviour, a woman knows her need because it is an integral part of her own make-up1. (shrink)

Despite some feminist wariness about the possibility of attaining full knowledge of the truth, this paper argues that feminists should work to disclose truth, particularly by exposing unacknowledged partiality and dishonesty. The struggle for truth should be understood as a moral and spiritual task, rather than rejected as a narrow and mistaken preoccupation of epistemologists. Some of the compromises that parts of the Church of England are prepared to endure by knowingly living with dishonesty are explored as a means of (...) illustrating the need to avoid compromise and to struggle for truth. It is argued that we should resist moves within the feminist philosophy of religion that would divert us from that struggle. Contra Jantzen, this paper stresses the importance of critical reasoning, which works hard at both exposing distortion and offering truer beliefs. Half-truths and semi-concealed power- relations throw people into distraction, by holding them in 'diabolical' circumstances. (shrink)

Another set of chapters tests the coherence of Anselmian theism and concepts of an Omni-God in relation to divine knowledge and goodness.This book will be of interest to scholars and undergraduates in philosophy of religion, as well as ...

Knight has shown how the moral growth of medical students involves a spiritual journey. He may, however, present too sanguine a portrayal of the extent to which the medical education environment promotes this moral and spiritual growth. Medical school may indeed be more abusive than supportive. Admitting more women to medical school and teaching more humanities courses, while worthwhile, will not necessarily promote the goals that Knight appropriately advocates.

Questions about how to negotiate belief and non-belief in social and public spheres are attracting an increasing amount of attention from academics in a range of disciplines, and from concerned members of the public. This volume addresses the emergence of ‘new atheism’ and the developing ‘spiritual but not religious’ phenomenon. Avoiding simplistic accounts of atheism, and of religious belief, it provides readers with insight into a wide range of nuances within theism and a-theism, as well as spiritual practice and faith. (...) The chapters by an international panel of contributors focus on topics such as: a typology or cartography of atheisms and agnosticism; contrasting types of atheism within Christianity and Buddhism; questions about cognitive and doxastic stances in atheisms; theist rejections of and atheist embracing of ‘God’; atheist aesthetics. Reaching beyond the Christian tradition, the book will be of particular interest to scholars of the philosophy of religion, as well as religious studies and theology more generally. (shrink)

This study examines the contentious claim that much evangelicalism is fundamentalist in character. Within Protestantism, the term `fundamentalism' denotes not only a movement but also a mentality which has greatly affected evangelicals, and which involves preserving as factual a reading of scripture as possible. Here the development and dismantling of the fundamentalist mentality is examined in light of philosophical influences upon evangelicalism over the last three centuries, notably: Common Sense Realism, neo-Calvinism, and modern hermeneutical philosophy. Particular attention is paid to (...) James Barr's critique of fundamentalism and to evangelical rejoinders. Harriet A. Harris proposes that the fundamentalist mentality does not do justice to evangelical experience since it is more concerned with the Bible's factual truthfulness than with its life-giving effects. An appendix on Global Fundamentalism brings together two rarely united fields of study: Protestant fundamentalism's relation to evangelicalism, and its relation to resurgent movements in other religions. (shrink)

According to standard philosophical and clinical understandings, pain is an essentially mental phenomenon. In a challenge to this standard conception, a recent burst of empirical work in experimental philosophy, such as that by Justin Sytsma and Kevin Reuter, purports to show that people ordinarily conceive of pain as an essentially bodily phenomenon—specifically, a quality of bodily disturbance. In response to this bodily view, other recent experimental studies have provided evidence that the ordinary concept of pain is more complex than previously (...) assumed: rather than tracking only bodily or only mental aspects of pain, the ordinary concept of pain can actually track either of these aspects. The polyeidic analysis of the folk concept of pain, as proposed by Emma Borg et al., captures this complexity. Whereas previous empirical support for the polyeidic view has focused on the context-sensitivity of the folk concept of pain, here we discuss individual differences in people’s ‘pain priors’—namely, their standing tendencies to think of pain in relatively mind-centric or body-centric ways. We describe a preliminary empirical study and present a small number of findings, which will be explored further in future work. The results we discuss are part of a larger programme of work which seeks to integrate philosophical pain research into clinical practice. For example, we hypothesise that variations in how patients with chronic pain are thinking about pain could help predict their responses to treatment. (shrink)

`Fundamentalism' is a label used often pejoratively of religious conservatism. Evangelicals are growing in number and power around the world and are frequently regarded as fundamentalist. This volume examines fundamentalism as a mentality which has greatly affected evangelicalism, but which some evangelicals now wish to leave behind.

Background Generally, there is unanimity about the value of community engagement in health-related research. There is also a growing tendency to view genetics and genomics research (GGR) as a special category of research, the conduct of which including community engagement (CE) as needing additional caution. One of the motivations of this study was to establish how differently if at all, we should think about CE in GGR. Aim To assess the perspectives of genetics and genomics researchers in Uganda on CE (...) in GGR. Method A cross-sectional qualitative study was conducted at Makerere University and Uganda Virus Research Institute. Twenty-five individuals participated, the majority being male (sixteen). Participants included nineteen genetics and genomics researchers (researchers and research coordinators), two CE officers, three nurses and one nursing counsellor. Data were collected using in-depth interviews and analyzed in a thematic manner using NVivo version 12 Plus. Study findings Thirteen of the respondents had conducted CE in their GGR in either a geographical and disease-specific community. Some respondents said CE principles are the same and there is no need for special consideration for CE in GGR. Others gave ethical issues in GGR that require special consideration for CE in such research and these were categorized into six themes: GGR is new to communities, Difficulty in communicating GGR by the researchers, Genes are shared in communities, Cultural sensitivities against GGR, Community attitude toward GGR, Some GGR studies take long to end, and Negotiation of research benefits. Special considerations for CE when conducting GGR were suggested and categorized into seven themes: creating awareness of GGR in communities, obtaining both community acceptance and individual consent, CE team composition, involve communities in solving GGR challenges, prolong CE in some GGR, develop guidelines for CE in GGR, and legal considerations on GGR. Conclusion GGR was characterized by special issues that require special CE considerations for such research. (shrink)

The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...) are embracing this populist rhetoric to encourage wider public participation. We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of “citizen science” outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of “public engagement” when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the “care.data” project of the National Health Service in England, and its proactive uses in the “Precision Medicine Initiative” of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of “citizen science,” the contexts in which it is used, and its demands with respect to participation, engagement, and governance. (shrink)

This reflection item provides an edited account of human rights lawyer Harriet Wistrich’s conversation with Manvir Grewal, Visiting Lecturer and Ph.D. student, and Harriet Samuels, Reader in Law at the University of Westminster. It summarises the exchange which focused on Harriet Wistrich’s career trajectory and the many public interest law cases that she has brought on behalf her clients, mainly women, in both domestic and international forums. It also includes a condensed version of the question and answer (...) session with the audience. Questions included the broader issues around domestic violence, rape, coercive control, sex work and the nature of feminism. (shrink)

Despite the worldwide prestige of America's doctoral programs in the humanities, all is not well in this area of higher education and hasn't been for some time. The content of graduate programs has undergone major changes, while high rates of student attrition, long times to degree, and financial burdens prevail. In response, the Andrew W. Mellon Foundation in 1991 launched the Graduate Education Initiative, the largest effort ever undertaken to improve doctoral programs in the humanities and related social sciences. The (...) only book to focus exclusively on the current state of doctoral education in the humanities, Educating Scholars reports on the GEI's success in reducing attrition and times to degree, the positive changes implemented by specific graduate programs, and the many challenges still to be addressed.Over a ten-year period, the Foundation devoted almost eighty-five million dollars through the GEI to provide support for doctoral programs and student aid in fifty-four departments at ten leading universities. The authors examine data that tracked the students in these departments and in control departments, as well as information gathered from a retrospective survey of students. They reveal that completion and attrition rates depend upon financial support, the quality of advising, clarity of program requirements, and each department's expectations regarding the dissertation. The authors consider who earns doctoral degrees, what affects students' chances of finishing their programs, and how successful they are at finding academic jobs.Answering some of the most important questions being raised about American doctoral programs today, Educating Scholars will interest all those concerned about our nation's intellectual future. (shrink)

To mark International Women’s Day the Research Group for Law, Gender and Sexuality at Westminster Law School held an evening conversation on 10 March 2016 on Women and Asylum. Speakers working in different areas of the asylum system shared their insights and experiences with an audience of staff, students, activists and other visitors. Harriet Samuels chaired the conversation and the speakers were Princess Chine Onyeukwu, Debora Singer, Priya Solanki and Zoe Harper. This article is an edited extract from the (...) transcript of the presentations and wide-ranging discussion, including the question and answer session. The discussion focused on the different steps in the refugee determination process and considered, in particular, the gendering of credibility and how women’s perceived lack of credibility has a significant impact on determinations and processes. (shrink)

Defining Mental Disorder: Jerome Wakefield and His Critics, edited by Denis Forest and Luc Faucher, is essential reading for students and researchers in philosophy of medicine whose work is informed by that of Jerome Wakefield, or the disease debate in general. If you are anything like me, this book will open the door to a new depth of understanding of the harmful dysfunction analysis (HDA) and its methodical underpinnings, and an enriched appreciation of what is at stake in defining medical (...) disorder. To those confident that they understand Wakefield’s view and the surrounding debate, thinking perhaps that they do not need a refresher, I would say: perhaps you do not understand it as well as you think. Defining Mental Disorder provides much more than an overview of previously well-trodden ground. The chapters themselves, and Wakefield’s own detailed responses, help to elucidate a number of methodological nuances and peculiarities that have rarely been covered in such depth before. I was startled to learn how philosophically complex Wakefield’s position actually is, and how shallow my own understanding of it has been. It emerges as a far more nuanced and sophisticated account than I had given it credit for, and one that deserves serious reevaluation. (shrink)

The ArgumentWritten as one book, Science, Technology and Society in Seventeenth-Century England has become two. One book, treating Puritanism and science, has since become “The Merton Thesis.” The other, treating shifts of interest among the sciences and problem choice within the sciences, has been less consequential. This paper proposes that neglect of one part of the monograph has skewed readers' understanding of the whole. Society and culture contributed to institutionalization of science and the directions it took, neither one exclusively. Four (...) aspects of the neglected chapters are examined: their theoretical underpinnings, the conceptions providing foundations for this part specifically and for the monograph as a whole; their comparative neglect, attributed partly to the absence of a cognitive constituency for their claims; the problem of problem choice in science in Merton's work; and the Merton monograph and later social constructionism:their differences and affinities. (shrink)

BackgroundInnovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment.MethodsAn interdisciplinary workshop jointly organised by the University of Oxford (...) and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach.ResultsDynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies.ConclusionsDynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures. (shrink)

As in other countries, the traditional doctor-patient relationship in the Japanese healthcare system has often been characterised as being of a paternalistic nature. However, in recent years there has been a gradual shift towards a more participatory-patient model in Japan. With advances in technology, the possibility to use digital technologies to improve patient interactions is growing and is in line with changing attitudes in the medical profession and society within Japan and elsewhere. The implementation of an online patient engagement platform (...) is being considered by the Myotonic Dystrophy Registry of Japan. The aim of this exploratory study was to understand patients’ views and attitudes to using digital tools in patient registries and engagement with medical research in Japan, prior to implementation of the digital platform. We conducted an exploratory, cross-sectional, self-completed questionnaire with a sample of myotonic dystrophy patients attending an Open Day at Osaka University, Japan. Patients were eligible for inclusion if they were 18 years or older, and were diagnosed with MD. A total of 68 patients and family members attended the Open Day and were invited to participate in the survey. Of those, 59 % submitted a completed questionnaire. The survey showed that the majority of patients felt that they were not receiving the information they wanted from their clinicians, which included recent medical research findings and opportunities to participate in clinical trials, and 88 % of patients indicated they would be willing to engage with digital technologies to receive relevant medical information. Patients also expressed an interest in having control over when and how they received this information, as well as being informed of how their data is used and shared with other researchers. Overall, the findings from this study suggest that there is scope to develop a digital platform to engage with patients so that they can receive information about medical care and research opportunities. While this study group is a small, self-selecting population, who suffer from a particular condition, the results suggest that there are interested populations within Japan that would appreciate enhanced communication and interaction with healthcare teams. (shrink)

This essay responds to Donna J. Haraway's (2016) provocation to ‘stay with the trouble’ of learning to live well with nonhumans as kin, through practice-based approaches to learning to care for nonhuman others. The cases examine the promotion of care for trees through mobile game apps for forest conservation, and kinship relations with city farm animals in Kentish Town, London. The cases are analysed with a view to how they articulate care practices as a means of making kin. Two concepts (...) are proposed, ‘learning from’ and ‘facing’ the Other, which are thickened through discussions of how caring takes place in each case in relation to a particular category of nonhuman other: animated tree and urban farm animal. Thus while attendant to situations of care involving a specific nonhuman subject, the cases also broker thinking on learning from and facing (the) other kinds of trees and animals, and the interspecies dynamics of which they are a part. The intersectional implications of the practice sites and participants are elaborated, to complexify and affirm situated but also reflexive approaches to caring. In doing this, the authors attend to their own positionalities, seeking to diversify Western-based ecofeminist engagements with caring, while asking what their research can do for the nonhuman other. They formulate and apply a collaborative methodological approach to the case studies, developed through cultivating attentiveness to the nonhuman subject of research. The authors consider in particular how attentiveness to the nonhuman other can facilitate practices of knowing that further a non-anthropocentric and non-innocent ethic of caring. By further interconnecting situations of caring for nonhuman animals and plants, the authors advocate for practices of care that antagonise how species boundaries are drawn and explore the implications for learning to care for nonhumans as kin. (shrink)

This article explores the co-existence of, and relationship between, alternative education in the form of home education and mainstream schooling. Home education is conceptually subordinate to schooling, relying on schooling for its status as alternative, but also being tied to schooling through the dominant discourse that forms our understandings of education. Practitioners and other defenders frequently justify home education by running an implicit or explicit comparison with school; a comparison which expresses the desire to do ‘better’ than school whilst simultaneously (...) encompassing the desire to do things differently. These twin aims, however, are not easy to reconcile, meaning that the challenge to schooling and the submission to norms and beliefs that underlie schooling are frequently inseparable. This article explores the trajectories of ‘better than’ and ‘different from’ school as representing ideas of utopia and heterotopia respectively. In particular I consider Foucault's notion of the heterotopia as a means of approaching the relationship between school and other forms of education. Whilst it will be argued that, according to Derrida's ideas of discursive deconstruction, alternative education has to be expressed through the dominant educational discourse, it will also be suggested that employing the idea of the heterotopia is a strategy which can help us explore the alternative in education. (shrink)

According to the Argument for Autonomous Mental Disorder, mental disorder can occur in the absence of brain disorder, just as software problems can occur in the absence of hardware problems in a computer. This article argues that the AAMD is unsound. I begin by introducing the “natural dysfunction analysis” of disorder, before outlining the AAMD. I then analyze the necessary conditions for realizer autonomous dysfunction. Building on this, I show that software functions disassociate from hardware functions in a way that (...) mental functions do not disassociate from brain functions. It follows that mental disorders are brain disorders necessarily. (shrink)

Dynamic Consent is both a model and a specific web-based tool that enables clear, granular communication and recording of participant consent choices over time. The DC model enables individuals to know and to decide how personal research information is being used and provides a way in which to exercise legal rights provided in privacy and data protection law. The DC tool is flexible and responsive, enabling legal and ethical requirements in research data sharing to be met and for online health (...) information to be maintained. DC has been used in rare diseases and genomics, to enable people to control and express their preferences regarding their own data. However, DC has never been explored in relationship to historical collections of bioscientific and genetic heritage or to contexts involving Aboriginal and Torres Strait Islander people.In response to the growing interest by First Peoples throughout Australia in genetic and genomic research, and the increasing number of invitations from researchers to participate in community health and wellbeing projects, this article examines the legal and ethical attributes and challenges of DC in these contexts. It also explores opportunities for including First Peoples' cultural perspectives, governance, and leadership as a method for defining DC on cultural terms that engage best practice research and data analysis as well as respect for meaningful and longitudinal individual and family participation. (shrink)

Resource constraints in developing countries compel policy makers to ration the provision of healthcare services. This article examines one such set of Guidelines: A patient dialysing in the state sector in South Africa may not refuse renal transplantation when a kidney becomes available. Refusal of transplantation can lead to exclusion from the state-funded dialysis programme. This Guideline is legally acceptable as related to Constitutional stipulations which allow for rationing healthcare resources in South Africa. Evaluating the ethical merit of the Guideline, (...) and exploring the ethical dilemma it poses, proves a more complex task. We examine the actions of healthcare professionals as constrained by the Guideline. From a best interests framework, we argue that in these circumstances directing patient decision making is not necessarily unethical or unacceptably paternalistic. We then scrutinise the guideline itself through several different ethical ‘lenses’. Here, we argue that bioethics does not provide a definitive answer as to the moral merit of rationing dialysis under these circumstances, however it can be considered just in this context. We conclude by examining a potential pitfall of the Guideline: Unwilling transplant recipients may not comply with immunosuppressive medication, which raises questions for policies based on resource management and rationing. (shrink)