In this article, we present an ethics framework for health practice in humanitarian and development work: the ethics of engaged presence. The ethics of engaged presence framework aims to articulate in a systematic fashion approaches and orientations that support the engagement of expatriate health care professionals in ways that align with diverse obligations and responsibilities, and promote respectful and effective action and relationships. Drawn from a range of sources, the framework provides a vocabulary and narrative structure for examining the moral (...) dimensions of providing development or humanitarian health assistance to individuals and communities, and working with and alongside local and international actors. The elements also help minimize or avoid certain miscalculations and harms. Emphasis is placed on the shared humanity of those who provide and those who receive assistance, acknowledgement of limits and risks related to the contributions of expatriate health care professionals, and the importance of providing skillful and relevant assistance. These elements articulate a moral posture for expatriate health care professionals that contributes to orienting the practice of clinicians in ways that reflect respect, humility, and solidarity. Health care professionals whose understanding and actions are consistent with the ethics of engaged presence will be oriented toward introspection and reflective practice and toward developing, sustaining and promoting collaborative partnerships. (shrink)

Nursing professionals in a variety of practice settings routinely use implied consent. This form of consent is used in place of or in conjunction with informed or explicit consent. This article looks at one aspect of a qualitative exploratory study conducted in a Day of Surgery Admission unit. This article focuses on the examination of nurses’ understandings of implied consent and its use in patient care in nursing practice. Data were collected through one-on-one interviews and analysed using a thematic analysis. (...) Nurses participating in this study revealed that they routinely used implied consent in their nursing practice. This article will look at whether implied consent supports or impedes a patient’s autonomy. (shrink)

In this article, we present an ethics framework for health practice in humanitarian and development work: the ethics of engaged presence. The ethics of engaged presence framework aims to articulate in a systematic fashion approaches and orientations that support the engagement of expatriate health care professionals in ways that align with diverse obligations and responsibilities, and promote respectful and effective action and relationships. Drawn from a range of sources, the framework provides a vocabulary and narrative structure for examining the moral (...) dimensions of providing development or humanitarian health assistance to individuals and communities, and working with and alongside local and international actors. The elements also help minimize or avoid certain miscalculations and harms. Emphasis is placed on the shared humanity of those who provide and those who receive assistance, acknowledgement of limits and risks related to the contributions of expatriate health care professionals, and the importance of providing skillful and relevant assistance. These elements articulate a moral posture for expatriate health care professionals that contributes to orienting the practice of clinicians in ways that reflect respect, humility, and solidarity. Health care professionals whose understanding and actions are consistent with the ethics of engaged presence will be oriented toward introspection and reflective practice and toward developing, sustaining and promoting collaborative partnerships. (shrink)

Recent articles published in this journal have highlighted the shortcomings of individualistic approaches to health promotion, and the potential contributions of relational analyses of autonomy to public health ethics. I argue that the latter helps to elucidate the former, by showing that an inadequate analysis of autonomy leads to misassignment of both forward-looking and backward-looking responsibility for health outcomes. Health promotion programmes predicated on such inadequate analyses are then ineffective, because they assign responsibility to agents whose social environment inhibits their (...) ability to act on such responsibilities; inequitable, because the social barriers to autonomous agency display a socio-economic gradient; and stigmatizing, because they license blaming of individuals for their own poor health without taking into account how reasonable it is to hold these individuals responsible, given the social barriers to autonomy they face. I further sketch how incorporating a relational understanding of autonomy could help to produce health promotion programmes that do not succumb to these difficulties, while avoiding coercive paternalism, exploring potential applications in ecological approaches to health promotion. (shrink)

This article approaches the ethical dilemma of healthcare allocation and rationing from the perspective of pragmatist ethics, mainly following John Dewey’s ethics. The moral dilemma of healthcare allocation arises whenever we allocate limited resources, and rationing is a necessary option for distributing available resources. In a broader sense, the moral problems of healthcare allocation also encompass the issue of access to primary healthcare, especially for low-income sections of communities. In this sense, allocation always entails rationing – denying service to someone (...) for the benefit of others. Such aspects of allocation and rationing and the relational aspect of disease and health make the problem morally controversial, which makes it difficult to agree on a principle or principles of allocation and rationing applicable across different contexts. Hence, this paper argues that moral challenges of healthcare rationing ought not to be addressed through the appeal to principles, but rather through deliberation that embraces a more pragmatic and democratic approach to negotiating health resource allocation and rationing. However, this does not mean that moral principles and values are insignificant in healthcare allocation. (shrink)

With advances in medical science, the concept of agency has received increasing attention in biomedical ethics. However, most of the ethical discussion around definitions of agency has focused either on patients suffering from mental disorders or on patients receiving cutting-edge medical treatments in developed countries. Very little of the discussion around concepts of agency has focused on the situation of patients suffering from common diseases that affect populations worldwide. Therefore, the most widely-used definitions of agency may be not appropriate to (...) analyse common diseases among large populations. The branch of social sciences known as development studies draw on their own definitions of the term agency that may provide a more applicable and accurate way of referring to common and general cases than the definitions currently used in bioethics. Moreover, the psychological Self-Determination Theory may improve the usefulness of these definitions in common situations. This article explains the characteristics and the shortcomings of current bioethical definitions of agency when they are applied to common medical conditions worldwide. A new, value-based concept of agency, informed by development studies, is proposed as more accurate and useful for biomedical ethics. (shrink)

If funding allocation is an indicator of a field’s priorities, then the priorities of the field of bioethics are misaligned because they perpetuate injustice. Social justice mandates priority for the factors that drive systematic disadvantage, which tend not to be the areas supported by funding within academic bioethics. Current funding priorities violate social justice by overemphasizing technologies that aim to enhance the human condition without addressing underlying structural inequalities grounded in racism, and by deemphasizing areas of inquiry most frequently pursued (...) by Scholars of Color. This lack of attention to upstream determinants of health in bioethics research perpetuates a gap in the resources needed to understand the experiences of communities disproportionately experiencing poor health, which is itself a form of epistemic injustice. Both social and epistemic injustices are apparent in the impact of these funding priorities on people of color, both in the public and in the bioethics community. (shrink)

BackgroundSince 2006, the genetic testing company 23andMe has collected biological samples, self-reported information, and consent documents for biobanking and research from more than 1,000,000 individuals, through a direct-to-consumer online genetic-testing service providing a genetic ancestry report and a genetic health report. However, on November 22, 2013, the Food and Drug Administration halted the sale of genetic health testing, on the grounds that 23andMe was not acting in accordance with federal law, by selling tests of undemonstrated reliability as predictive tests for (...) medical risk factors. Consumers could still obtain the genetic ancestry report, but they no longer had access to the genetic health report in the United States. However, this did not prevent the company from continuing its health research, with previously obtained and future samples, provided that consent had been obtained from the consumers concerned, or with health reports for individuals from other countries. Furthermore, 23andMe was granted FDA authorization on February 19, 2015, first to provide reports about Bloom syndrome carrier status, and, more recently, to provide consumers with “carrier status” information for 35 genes known to cause disease.DiscussionIn this Debate, we highlight the likelihood that the primary objective of the company was probably two-fold: promoting itself within the market for predictive testing for human genetic diseases and ancestry at a low cost to consumers, and establishing a high-value database/biobank for research and personal information).SummaryBy dint of this marketing approach, a two-sided market has been established between the consumer and the research laboratories, involving the establishment of a database/DNA biobank for scientific and financial gain. We describe here the profound ethical issues raised by this setup. (shrink)

Respice...prospice: Philosophy, ethics and the character of medical care for the future.

Although the field of surgical ethics focuses primarily on informed consent, surgical decision‐making, and research ethics, some surgeons have started to consider ethical questions regarding justice and solidarity with poor and minoritized populations. To date, those calling for social justice in surgical care have emphasized increased diversity within the ranks of the surgical profession. This article, in contrast, foregrounds the agency of those most affected by injustice by bringing to bear an ethic of accompaniment. The ethic of accompaniment is born (...) from a theological tradition that has motivated work to improve health outcomes in those at the margins through its emphasis on listening, solidarity against systemic drivers of disease, and proximity to individuals and communities. Through a review of surgical ethics and exploration of a central patient case, we argue for applying an ethic of accompaniment to the care of surgical patients and their communities. (shrink)

In face of the multiple controversies surrounding the DSM process in general and the development of DSM-5 in particular, we have organized a discussion around what we consider six essential questions in further work on the DSM. The six questions involve: 1) the nature of a mental disorder; 2) the definition of mental disorder; 3) the issue of whether, in the current state of psychiatric science, DSM-5 should assume a cautious, conservative posture or an assertive, transformative posture; 4) the role (...) of pragmatic considerations in the construction of DSM-5; 5) the issue of utility of the DSM – whether DSM-III and IV have been designed more for clinicians or researchers, and how this conflict should be dealt with in the new manual; and 6) the possibility and advisability, given all the problems with DSM-III and IV, of designing a different diagnostic system. Part 1 of this article took up the first two questions. Part 2 took up the second two questions. Part 3 now deals with Questions 5 & 6. Question 5 confronts the issue of utility, whether the manual design of DSM-III and IV favors clinicians or researchers, and what that means for DSM-5. Our final question, Question 6, takes up a concluding issue, whether the acknowledged problems with the earlier DSMs warrants a significant overhaul of DSM-5 and future manuals. As in Parts 1 & 2 of this article, the general introduction, as well as the introductions and conclusions for the specific questions, are written by James Phillips, and the responses to commentaries are written by Allen Frances. (shrink)

Informed consent is medico-legal orthodoxy and the principal means by which research encounters with the body are regulated in the UK. However, biomedical advancements increasingly frustrate the degree to which informed consent can be practiced, whilst introducing ambiguity into its legal significance. What is more, feminist theory fundamentally disrupts the ideologically liberal foundations of informed consent, exposing it as a potentially inadequate mode of bioethical regulation. This paper explores these critiques by reference to a case study—embryo donation to health research, (...) following fertility treatment, as regulated by the HFEA 1990—and contends that informed consent cannot adequately respond to the material realities of this research encounter. Thereafter, by drawing on feminist theories of vulnerability, this paper proffers an alternative bioethical approach, which calls for structural reform in recognition of the fundamentally bilateral constitution of self and society and a renewed appreciation for the affective/dispositional tenor of lived experience. (shrink)

The COVID-19 pandemic has provoked new interest in the notion of vulnerability and in identifying alternative approaches for responding to vulnerable patients and populations during health emergencies. In this paper, I argue that the autonomy-based approach (the most dominant approach in bioethics) to responding to vulnerability during health emergencies is deficient because it focuses only on the interests, values, and decisions of the individual patient. It overly emphasizes respect for autonomy and not respect for the patient as it does not (...) consider the patient as a social and relational agent. Indeed, relational approaches to autonomy like the feminist and indigenous sub-Saharan African ethical approaches are promising alternatives. In this essay, I use the indigenous African relational approach to autonomy as an example of an alternative method which can be used to respond to vulnerability during a global health emergency like COVID-19. (shrink)