International health research in malaria-endemic settings may include screening for sickle cell disease, given the relationship between this important genetic condition and resistance to malaria, generating questions about whether and how findings should be disclosed. The literature on disclosing genetic findings in the context of research highlights the role of community consultation in understanding and balancing ethically important issues from participants’ perspectives, including social forms of benefit and harm, and the influence of access to care. To inform research practice locally, (...) and contribute to policy more widely, this study aimed to explore the views of local residents in Kilifi County in coastal Kenya on how researchers should manage study-generated information on sickle cell disease and carrier status. (shrink)

Benefit sharing in health research has been the focus of international debates for many years, particularly in developing countries. Whilst increasing attention is being given to frameworks that can guide researchers to determine levels of benefits to participants, there is little empirical research from developing countries on the practical application of these frameworks, including in situations of extreme poverty and vulnerability. In addition, the voices of those who often negotiate and face issues related to benefits in practice - frontline researchers (...) and fieldworkers - are rarely included in these debates. Against this background, this paper reports on experiences of negotiating research participation and benefits as described by fieldworkers, research participants and researchers in two community based studies. (shrink)

There is growing evidence demonstrating that nursing students encounter unsafe and poor clinical practice when on clinical placement. The impact on nursing students remains relatively under‐explored, especially in the Australian context. This two‐phased qualitative study used Interpretive Description to explore 53 pre‐registration nursing students’ perceptions and experiences of speaking up for patient safety. Results of the study identified students believe speaking up is the right thing to do, and their professional responsibility. The study results add to previous research by describing (...) the dissonance students experience due to the inconsistencies between what is taught at university and performed in practice. Student's distress arises when observing nurses taking short cuts, justifying such actions and making excuses about poor practice. Students report experiencing dissonance, bewilderment and confusion and at times, anger when observing poor practice. The clinical environment culture influences students’ decisions to speak up or remain silent. Understanding students’ perceptions and responses will promote awareness and discussion essential to the future development of curricula and clinical support strategies that will enable students to speak up. (shrink)

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...) meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)

We critically engage two traditional views of scientific data and outline a novel philosophical view that we call the pragmatic-representational view of data. On the PR view, data are representations that are the product of a process of inquiry, and they should be evaluated in terms of their adequacy or fitness for particular purposes. Some important implications of the PR view for data assessment, related to misrepresentation, context-sensitivity, and complementary use, are highlighted. The PR view provides insight into the common (...) but little-discussed practices of iteratively reusing and repurposing data, which result in many datasets’ having a phylogeny—an origin and complex evolutionary history—that is relevant to their evaluation and future use. We relate these insights to the open-data and data-rescue movements, and highlight several future avenues of research that build on the PR view of data. (shrink)

The National Health Service (NHS) was the first healthcare system globally to declare ambitions to become net carbon zero. To achieve this, a shift away from metered-dose inhalers which contain powerful greenhouse gases is necessary. Many patients can use dry powder inhalers which do not contain greenhouse gases and are equally effective at managing respiratory disease. This paper discusses the ethical issues that arise as the NHS attempts to mitigate climate change. Two ethical issues that pose a barrier to moving (...) away from metered-dose inhalers are considered: patients who decline an inhaler with a smaller carbon footprint and increased cost. I argue that while a patient is not morally justified in refusing a more environmentally sustainable inhaler due to the expected harms, a doctor may still prescribe a metered-dose inhaler if they believe that switching without consent might undermine trust or substantially worsen the patient’s health. Turning to cost, I argue that the imperative to combat climate change means the NHS should accept small increased financial costs for lower carbon inhalers, even though this provides no additional direct benefit for the patient. I then go on to consider the implications of the preceding analysis for policy and practice. I argue for a policy that minimises the impact of inhalers on the climate by advocating for a principle of environmental prescribing and explore decision-making in practice. While the arguments here pertain primarily to inhalers, the discussion has broader implications for debates around healthcare’s responsibility to be environmentally sustainable. (shrink)

Controlled human malaria infection (CHMI) studies involve the deliberate infection of healthy volunteers with malaria parasites under controlled conditions to study immune responses and/or test drug or vaccine efficacy. An empirical ethics study was embedded in a CHMI study at a Kenyan research programme to explore stakeholders’ perceptions and experiences of deliberate infection and moral implications of these. Data for this qualitative study were collected through focus group discussions, in‐depth interviews and non‐participant observation. Sixty‐nine participants were involved, including CHMI study (...) volunteers, community representatives and research staff. Data were managed using QSR Nvivo 10 and analysed using an inductive‐deductive approach, guided by ethics literature. CHMI volunteers had reasonable understanding of the study procedures. Decisions to join were influenced by study incentives, trust in the research institution, their assessment of associated burdens and motivation to support malaria vaccine development. However, deliberate malaria infection was a highly unusual research strategy for volunteers, community representatives and some study staff. Volunteers’ experiences of physical, emotional and social burdens or harms were often greater than anticipated initially, and fluctuated over time, related to specific procedures and events. Although unlikely to deter volunteers' participation in similar studies in furture, we argue that the dissonance between level of understanding of the burdens involved and actual experiences are morally relevant in relation to community engagement, informed consent processes, and ongoing support for volunteers and research staff. We further argue that ethics oversight of CHMI studies should take account of these issues in deciding whether consent, engagement and the balance of benefits and harms are reasonable in a given context. (shrink)

These essays emerged from papers presented under the auspices of the American Academy of Religion. This volume contributes to scholarship that explores Christianity's role in modernity, the ongoing implications of historical controversies, and the importance of history in Christian theology.

It is widely assumed that there exist certain objects which can in no way be distinguished from each other, unless by their location in space or other reference-system. Some of these are, in a broad sense, 'empirical objects', such as electrons. Their case would seem to be similar to that of certain mathematical 'objects', such as the minimum set of manifolds defining the dimensionality of an R -space. It is therefore at first sight surprising that there exists no branch of (...) mathematics, in which a third parity-relation, besides equality and inequality, is admitted; for this would seem to furnish an appropriate model for application to such instances as these. I hope, in this work, to show that such a mathematics in feasible, and could have useful applications if only in a limited field. The concept of what I here call 'indistinguishability' is not unknown in logic, albeit much neglected. It is mentioned, for example, by F. P. Ramsey [1] who criticizes Whitehead and Russell [2] for defining 'identity' in such a way as to make indistinguishables identical. But, so far as I can discover, no one has made any systematic attempt to open up the territory which lies behind these ideas. What we find, on doing so, is a body of mathematics, offering only a limited prospect of practical usefulness, but which on the theoretical side presents a strong challenge to conventional ideas. (shrink)

They enterin curves and stoopslimping and tappinga file of bare armscreased faces upliftedred eyelids poutingeyes curtained in cataract.The syringes are magazined at his hip.A pinch of skinin a chill autumn morninga stinging spreads outat the borders of shouldersthe grim supplicationfor all his attentionthe trembling smileon his remembering a name.Swabs spent in bucketsthe names all collecteda shifting and amblingacross the lawns to their liveson small porchesand in dim echoing cells.Washing his handsof the short easy morningthose bird-bone armsgrow stars of Davidin the (...) injected whealsand the upturned headspull at his neckfor a sparklet of mercyhe prodding them downinto the frostfrom the stinking trainsat the point of more serious weaponry.They are a herdfanning out to their winding down daysdark-eyed ones shuffling blindto other deaths, gassed and limed. (shrink)

The Supreme Court ended its last term by making unconstitutional a choice Brown v. Board of Education once required - the voluntary, and race conscious, pursuit of integration - to little public outcry. As a society, we continue to find comfort in segregation. This Article argues that this acceptance is wrong, both educationally and constitutionally. It does so through the lens of teacher segregation, a topic all but ignored in the current literature. The first step of this argument is demonstrating, (...) by an original empirical study, the segregation of teachers, thereby proving a more profound school segregation than is generally recognized. The second step establishes, through an extensive review of the existing social science literature, that the typical minority student benefits from integration because it ensures a fundamental resource - experienced teachers. Lastly, the inherent inequality of segregation should have constitutional implications. While the Rehnquist Court utilized an interest balancing approach to the Equal Protection clause and recognized the constitutional harms of segregation, the Roberts Court has begun to minimize the Equal Protection to concern only capitalizing individual treatment and has erred in creating a "constitutional chill" toward the value of integration. (shrink)

This article is the fourth dialogue in a series in which two characters, a pro‐business experienced manager and a critical management academic idealist, debate contemporary management. In this dialogue, the discussion concerns the curriculum of business and management courses. Though as usual there is little agreement between the two participants, the discussion clearly shows just how difficult it will be to change business education without also changing the market position of business schools. Other topics concern the sort of economic assumptions (...) embedded in much of the curriculum, and the relationship between practical skills and political descriptions of capitalism. (shrink)

BackgroundLiterature on issues relating to comprehension during the process of obtaining informed consent (IC) has largely focused on the challenges potential participants can face in understanding the IC documents, and the strategies used to enhance comprehension of those documents. In this review, we set out to describe the factors that have an impact on comprehension and the strategies used to enhance the IC process in sub-Saharan African countries.MethodsFrom November 2021 to January 2022, we conducted a literature search using a PRISMA (...) tool. We searched electronic databases (PubMed, EMBASE, EBSCOHOST) to identify relevant peer reviewed studies. We then reviewed the references of these articles to find additional literature that might have been missed through the initial search. We were particularly interested in full text articles in English that focused on the IC process in SSA published between 2006 and 2020. We included systematic reviews, and studies from Western and Asian countries that included data about SSA. We excluded articles that focused on medical interventions and studies that did not require IC.ResultsOut of the 50 studies included most were multi-country (n = 13) followed by single country studies in South Africa (n = 12); Kenya, Tanzania, Uganda (n = 5) each; Gambia, Ghana and Nigeria (n = 2)each ; and one each for Botswana, Malawi, Mali, Mozambique. We identified three areas of focus: (1) socio-cultural factors affecting IC; (2) gaps in the ethical and legal frameworks guiding the IC process; and (3) strategies used to improve participants’ understanding of IC.ConclusionOur review showed wide recognition that the process of achieving IC in SSA is inherently challenging, and there are limitations in the strategies aimed at improving comprehension in IC. We suggest that there is a need for greater flexibility and negotiation with communities to ensure that the approach to IC is suited to the diverse socio-cultural contexts. We propose moving beyond the literal translations and technical language to understanding IC comprehension from the participants’ perspectives and the researchers’ views, while examining contextual factors that impact the IC process. (shrink)

Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private sector is likely to play an important role in generating public benefits from precision medicine initiatives, it is (...) important to understand what the concerns are and how they might be mitigated. This study reports outcomes of a deliberative method of citizen engagement in Singapore that asked whether sharing precision medicine data with private industry would be permissible, and if so, under what circumstances. Findings from this citizens’ jury suggest sharing with industry would be permissible under certain conditions that are set out in nine recommendations. Implications of the recommendations and their underlying assumptions for policy decision makers are discussed. This study aligns with prior international studies which found conditional acceptance for data sharing with private industry, a public benefit requirement, specific reluctance to share with insurance companies and an emphasis on accountability and transparency to demonstrate trustworthiness. However, our results differ from prior studies in that opt-in consent did not dominate the deliberations as jurors were able to set it aside as an assumed prerequisite for participation in a precision medicine programme. (shrink)

Burnout among health professionals is at epidemic proportions. In response, many health institutions have emphasised the importance of self-care, relying particularly on the idea that doctors who are burned out provide worse care for their patients. Although not made explicit, this suggests that doctors might have a responsibility to their patients (and perhaps others) to practice self-care. This chapter explores the potential grounds for such an obligation. We suggest that while there is potential for a limited obligation of self-care, institutional (...) emphasis on this risks instrumentalising doctors' well-being, minimising institutional responsibilities and workers' rights, and being excessively demanding for individuals. (shrink)

In an effort to ensure access to justice, Australian courts have fashioned a unique hybrid opt in-opt out process known as “closed classes.” The rationale that underlies closed classes is to prevent free-riding that may undercut the position of funders and class action law firms reliant upon entering into agreements with a critical mass of class members. However, multiple closed classes also pose problems for respondents seeking the comfort of finality. To secure settlement and thus ultimately benefit participating class members, (...) Australian courts have formulated a procedure whereby the closed class is opened and nonparticipating class members are invited to either register their claims or opt out so that thereafter those who do not register and those who opt out are effectively precluded by res judicata from making further related claims. We argue that Australian courts’ support of closed classes, while driven by pragmatism, has produced unintended consequences. Many relate to the ethical dilemmas faced by class action law firms and litigation funders seeking to advance the interests of participating class members over and above those of nonparticipating class members. The Full Federal Court has recently approved an alternative common fund approach. However, questions remain as to whether Australian courts are appropriately equipped to measure and compare the alternative transaction costs associated with the current and proposed approach, and whether they are appropriately equipped to determine the commercial rectitude and fairness of litigation funding agreements. (shrink)

Head transplantation fits within the broader conceptual space occupied by transhumanists and others who seek to extend the lives of human beings indefinitely. It is reasonable to reflect on whether, under what circumstances, and in what ways human immortality would be good. In this paper, I disambiguate the ways in which immortality might be considered a human good and then argue that immortality is neither necessary nor sufficient condition for objective meaning in life. I also argue that mortality is not (...) a necessary condition for objective meaning in life. (shrink)

There is a need for all industries, including healthcare, to reduce their greenhouse gas emissions. In anaesthetic practice, this not only requires a reduction in resource use and waste, but also a shift away from inhaled anaesthetic gases and towards alternatives with a lower carbon footprint. As inhalational anaesthesia produces greenhouse gas emissions at the point of use, achieving sustainable anaesthetic practice involves individual practitioner behaviour change. However, changing the practice of healthcare professionals raises potential ethical issues. The purpose of (...) this paper is twofold. First, we discuss what moral duties anaesthetic practitioners have when it comes to practices that impact the environment. We argue that behaviour change among practitioners to align with certain moral responsibilities must be supplemented with an account of institutional duties to support this. In other words, we argue that institutions and those in power have second-order responsibilities to ensure that practitioners can fulfil their first-order responsibilities to practice more sustainably. The second goal of the paper is to consider not just the nature of second-order responsibilities but the content. We assess four different ways that second-order responsibilities might be fulfilled within healthcare systems: removing certain anaesthetic agents, seeking consensus, education and methods from behavioural economics. We argue that, while each of these are a necessary part of the picture, some interventions like nudges have considerable advantages. (shrink)

Like all human activities, scientific research is infused with values. Scientific discovery can, for example, be valued as an end in itself. The phrase ethical values is an umbrella term for much of what people care about aside from knowledge for its own sake. Ethical values encompass reasons for caring about the harms caused by climate impacts or the injustice of how those harms are distributed. The closer that research gets to informing real-world actions, the more the design of that (...) research can be examined from the perspective of ethical values. Which societal challenges does the research aim to inform? From whose perspective does a policy analysis view potential outcomes? In this chapter we use a series of examples to illustrate how researchers’ choices regarding the treatment of uncertainties can have important consequences from the perspective of ethical values. Our aims in this chapter are: to familiarize readers with the key concept of coupled ethical–epistemic choices; to build capacity for recognizing such choices within the treatment of uncertainties; to encourage engagement with ethical values as a part of climate change research; and to offer some guidance on how to start doing so. (shrink)

Internationally, calls for feedback of findings to be made an ‘ethical imperative’ or mandatory have been met with both strong support and opposition. Challenges include differences in issues by type of study and context, disentangling between aggregate and individual study results, and inadequate empirical evidence on which to draw. In this paper we present data from observations and interviews with key stakeholders involved in feeding back aggregate study findings for two Phase II malaria vaccine trials among children under the age (...) of 5 years old on the Kenyan Coast. In our setting, feeding back of aggregate findings was an appreciated set of activities. The inclusion of individual results was important from the point of view of both participants and researchers, to reassure participants of trial safety, and to ensure that positive results were not over-interpreted and that individual level issues around blinding and control were clarified. Feedback sessions also offered an opportunity to re-evaluate and re-negotiate trial relationships and benefits, with potentially important implications for perceptions of and involvement in follow-up work for the trials and in future research. We found that feedback of findings is a complex but key step in a continuing set of social interactions between community members and research staff (particularly field staff who work at the interface with communities), and among community members themselves; a step which needs careful planning from the outset. We agree with others that individual and aggregate results need to be considered separately, and that for individual results, both the nature and value of the information, and the context, including social relationships, need to be taken into account. (shrink)

Volume 20, Issue 8, August 2020, Page W14-W16.

These starkly beautiful photographs document the daily life and labor of blue-collar workers in modern America. From a foundry in which the very fires of hell seem to blast to an air-conditioned computer control room in which the workers appear casual and comfortable, David Parker's lens captures what Peter Rachleff calls "a performance, a ritual, an exercise centuries ol""-men and women at work on factory floors. These photographs, taken in twenty plants in all parts of Minnesota, explore the common (...) bonds of industrial labor. Whether it's the Ford plant in St. Paul, the Potlatch paper mill in Cloquet, or the Toro engine manufacturer in Windom, Parker seeks to honor "the collective genius of the American worker." Excerpts from interviews with the workers reveal their opinions on such diverse topics as health care and child care, union activity, immigrant labor, and the effects of globalization. Their words and these photographs document industrial laborers and the factories in which they work, revealing how workers interact with each other and their environment and how the culture of labor is reflected in the jobs women and men do. An appendix provides a history and description of each workplace, detailing the magnitude of production and the constant ingenuity required to manufacture even the most common products. This book is a tribute to the women and men who process the foods we eat, manufacture the cars we drive, and produce the goods that make our lives comfortable. (shrink)

With examples from around the world, renowned wildlife photographer Edward Parker reveals the skills and techniques needed to improve your photographs with little or no adjustments to the automatic settings or those which you are comfortable using. The first part of the book explains how the brain perceives an image and how to use this to produce great photos through better composition, better use of light and conscious use of foreground and background. For more advanced photographers, Parker then (...) explains techniques on how to take control of the camera though understanding exposure, focus, aperture, shutter speed, and using flash. The final part of the book looks at the many way in which trees can be photographed, putting all of this into practice, illustrated by stunning images from around the world along with anecdotes on how they were captured. (shrink)

Shanachie and Norm Content Type Journal Article Category Case Studies Pages 1-2 DOI 10.1007/s11673-012-9356-0 Authors Malcolm Parker, School of Medicine, The University of Queensland, 288 Herston Road, Herston, QLD 4006, Australia Journal Journal of Bioethical Inquiry Online ISSN 1872-4353 Print ISSN 1176-7529.

Healthcare systems produce significant greenhouse gas emissions, raising an important question: should healthcare be treated like any other polluter when it comes to reducing its emissions, or is healthcare special because of its essential societal role? On one hand, reducing emissions is critical to combat climate change. On the other, healthcare depends on emissions to deliver vital services. The resulting tension surrounds an idea of healthcare exceptionalism and leads to the question I consider in this paper: to what extent (if (...) any) should the valuable goals of healthcare form an exception to the burdens of reducing greenhouse gas emissions? The goals of this paper are twofold. One is to think about how to address the issue of healthcare exceptionalism. Second is to discuss the extent of healthcare’s climatic responsibilities. I examine two perspectives on healthcare exceptionalism. The first treats a responsibility to reduce emissions and the delivery of healthcare as separate issues, each governed by its own principle. I reject this view, proposing instead that we consider healthcare’s environmental responsibilities in conjunction with its essential functions. I defend an “inability to pay” principle, suggesting that while healthcare should indeed contribute to mitigating climate change, its obligations should be constrained by the necessity of maintaining its core goals like protecting health and preventing disease. Healthcare should be treated differently from other sectors, but not to the extent that it is entirely exempt from efforts to reduce emissions. (shrink)