Samia Hurst

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.

Background Although it is the moral duty of physicians to protect vulnerable patients, there are no data on how vulnerability is perceived in clinical practice. This study explores how physicians classify someone as “vulnerable”. Method Thirty-three physicians were initially questioned about resource allocation problems in their work. The results of these interviews were examined with qualitative study software to identify characteristics associated with vulnerability in patients. Data were conceptualized, classified and cross-linked to highlight the major determinants of vulnerability. The findings revealed the principal factors that make patients vulnerable in clinical practice, according to our definition of vulnerability: the likelihood of having one’s interests unjustly considered. Results Vulnerability can arise as a result of a mismatch between the characteristics of patients and physicians, the healthcare system, the treatment, or the communication between physicians and patients. Vulnerability appears as a gap between a patient’s needs and the means intended to meet them. Vulnerability can further be the result of doing too little or too much for patients. This result suggests that structures provided by healthcare systems are not as differentiated as they should be to cover all situations. Our initial definition of vulnerability was illustrated and supported by our results, showing that it encompasses all factors involved, not solely personal characteristics, indicating the need for a more pragmatic approach for use in clinical practice. Conclusion Vulnerability is not due to a single factor but appears under certain circumstances when there is a discrepancy between a patient’s interests and the care provided, despite existing compensation systems.

Background Implicit biases are present in the general population and among professionals in various domains, where they can lead to discrimination. Many interventions are used to reduce implicit bias. However, uncertainties remain as to their effectiveness. Methods We conducted a systematic review by searching ERIC, PUBMED and PSYCHINFO for peer-reviewed studies conducted on adults between May 2005 and April 2015, testing interventions designed to reduce implicit bias, with results measured using the Implicit Association Test (IAT) or sufficiently similar methods. Results 30 articles were identified as eligible. Some techniques, such as engaging with others’ perspective, appear unfruitful, at least in short term implicit bias reduction, while other techniques, such as exposure to counterstereotypical exemplars, are more promising. Robust data is lacking for many of these interventions. Conclusions Caution is thus advised when it comes to programs aiming at reducing biases. This does not weaken the case for implementing widespread structural and institutional changes that are multiply justified.

In Switzerland, people can be granted access to assisted suicide on condition that the person whose wish is to die performs the fatal act, that he has his decisional capacity and that the assisting person’s conduct is not selfishly motivated. No restrictions relating to the ground of suffering are mentioned in the act. Existential suffering as a reason for wanting to die, however, gives raise to controversial issues. Moreover, existential suffering lacks definition and no consensus exists on how to evaluate and manage it. This study explores the perspectives of care professionals and volunteers from a “right-to-die organization” on existential suffering as a motive for assisted suicide requests. A qualitative study based on face-to-face interviews was conducted with twenty-six participants: palliative care and primary care providers as well as EXIT right-to-die organization volunteers. Elements from the grounded theory approach were used. The twenty-six participants described existential suffering in a multiplicity of individual ways. In total, sixty-three stories were recounted. Their representations were grouped into eight categories: physical decline and its consequences, loneliness, fear of the future, life is over, loss of social significance, loss of hope for a better future, being a financial burden and loss of pleasurable activities. According to all participants, suffering coming from the loss of self-identity was always linked to physical decline, as if one’s image completely defined someone’s identity. Society’s perception of old people and vulnerable people were also often questioned. Another interesting point was that only four stories referring to a “pure” existential suffering were found. This suffering was related to a feeling that life has come to an end, without identification of any other related restriction or suffering. Existential suffering is multifaceted. Legislators and right-to-die organisations have to address the question of what make a AS acceptable. The plurality of existential suffering implies the need of a very personalized care. A better understanding of what it is made of could provide a “toolbox” to people concerned by these requests, helping them to explore it in order to offer suffering people a wider range of alternatives.

Gratitude is both expected and problematic in live organ donation. Are there grounds to require it, and to forbid access to live donor transplantation to a recipient who fails to signal that he feels any form of gratitude? Recipient gratitude is not currently required for organ donation, but it is expected and may be a moral requirement. Despite this, we argue that making it a condition for live organ transplantation would be unjustified. It would constitute a problematic and disproportionate punishment for perceived immoral behaviour on the part of the recipient. It would also bar the donor from positive aspects of organ donation that remain even in the absence of recipient gratitude. A potential recipient's lack of gratitude should be explored as a possible symptom of other morally problematic issues and integrated into the information provided to the potential donor. Recognition of the donor's gift and gratitude for it may also need to be expressed in part by others. This last aspect is relevant even in cases where the recipient feels and expresses gratitude.

ABSTRACT Uncertainty as to how we should articulate empirical data and normative reasoning seems to underlie most difficulties regarding the ‘empirical turn’ in bioethics. This article examines three different ways in which we could understand ‘empirical turn’. Using real facts in normative reasoning is trivial and would not represent a ‘turn’. Becoming an empirical discipline through a shift to the social and neurosciences would be a turn away from normative thinking, which we should not take. Conducting empirical research to inform normative reasoning is the usual meaning given to the term ‘empirical turn’. In this sense, however, the turn is incomplete. Bioethics has imported methodological tools from empirical disciplines, but too often it has not imported the standards to which researchers in these disciplines are held. Integrating empirical and normative approaches also represents true added difficulties. Addressing these issues from the standpoint of debates on the fact‐value distinction can cloud very real methodological concerns by displacing the debate to a level of abstraction where they need not be apparent. Ideally, empirical research in bioethics should meet standards for empirical and normative validity similar to those used in the source disciplines for these methods, and articulate these aspects clearly and appropriately. More modestly, criteria to ensure that none of these standards are completely left aside would improve the quality of empirical bioethics research and partly clear the air of critiques addressing its theoretical justification, when its rigour in the particularly difficult context of interdisciplinarity is what should be at stake.

Research is crucial to improve medicine's ability to care for the sick, and this includes research on conditions affecting cognition. This article focuses on whether persons suffering from diseases affecting cognition can be enrolled in research when the purpose is to investigate the condition leading to this impairment. It also discusses when they may be enrolled and on the precautions which are necessary if they are. Protections for vulnerable persons in research have two components: fair subject selection, and the specific care required to minimize wrongs to vulnerable persons once they are enrolled in research. Finally, the article examines, and rejects, the idea that there could be circumstances in which persons suffering from diseases affecting cognition could have an obligation to participate in research addressing these disorders.

Assisting suicide is legal in Switzerland if it is offered without selfish motive to a person with decision-making capacity. Although the ‘Swiss model’ for suicide assistance has been extensively described in the literature, the formally and informally protected liberties and claims of assistors and recipients of suicide assistance in Switzerland are incompletely captured in the literature. In this article, we describe the package of rights involved in the ‘Swiss model’ using the framework of Hohfeldian rights as modified by Wenar. After outlining this framework, we dissect the rights involved in suicide assistance in Switzerland, and compare it with the situation in England and Germany. Based on this approach, we conclude that in Switzerland, claim rights exist for those requesting suicide assistance, and for those who are considering providing such assistance, even though no entitlements exist toward suicide assistance. We then describe the implementation of the ‘Swiss model’ and difficulties arising within it. Clarifying these issues is important to understand the Swiss situation, to evaluate what features of it may or may not be worth correcting or emulating, and to understand how it can impact requests for suicide assistance in other countries due to ‘suicide tourism’. It is also important to understand exactly what sets Switzerland apart from other countries with different legislations regarding suicide assistance.

Several contributions in this book tell of doctors' increasing emigration from developing countries where they are in critical shortage, especially from the underserved rural and public sectors of countries in sub-Saharan Africa (SSA) and South Asia. They point out the severe harm from that migration to some of the world's poorest and sickest populations who have no other doctors to turn to, and gain little from their emigration. Since significant harm to the badly off is bad, decline in that migration is usually a good development. But how to strive to achieve it?

Although rationing by clinical judgment is controversial, its acceptability partly depends on how it is practiced. In this paper, rationing by clinical judgment is defined in three different circumstances that represent increasingly wider circles of resource pools in which the rationing decision takes place: triage during acute shortage, comparison to other potential patients in a context of limited but not immediately strained resources, and determination of whether expected benefit of an intervention is deemed sufficient to warrant its cost by reference to published population based thresholds. Notions of procedural justice are applied along with an analytical framework of six minimal requisites in order to facilitate fair bedside rationing: (1) a closed system that offers reciprocity, (2) attention to general concerns of justice, (3) respect for individual variations, (4) application of a consistent process, (5) explicitness, and (6) review of decisions. The process could be monitored for its applicability and appropriateness.

Despite broad agreement that the vulnerable have a claim to special protection, defining vulnerable persons or populations has proved more difficult than we would like. This is a theoretical as well as a practical problem, as it hinders both convincing justifications for this claim and the practical application of required protections. In this paper, I review consent-based, harm-based, and comprehensive definitions of vulnerability in healthcare and research with human subjects. Although current definitions are subject to critique, their underlying assumptions may be complementary. I propose that we should define vulnerability in research and healthcare as an identifiably increased likelihood of incurring additional or greater wrong. In order to identify the vulnerable, as well as the type of protection that they need, this definition requires that we start from the sorts of wrongs likely to occur and from identifiable increments in the likelihood, or to the likely degree, that these wrongs will occur. It is limited but appropriately so, as it only applies to special protection, not to any protection to which we have a valid claim. Using this definition would clarify that the normative force of claims for special protection does not rest with vulnerability itself, but with pre-existing claims when these are more likely to be denied. Such a clarification could help those who carry responsibility for the protection of vulnerable populations, such as Institutional Review Boards, to define the sort of protection required in a more targeted and effective manner.

Next SectionAccess to medicines, vaccination and care in resource-poor settings is threatened by the emigration of physicians and other health workers. In entire regions of the developing world, low physician density exacerbates child and maternal mortality and hinders treatment of HIV/AIDS. This article invites philosophers to help identify ethical and effective responses to medical brain drain. It reviews existing proposals and their limitations. It makes a case that, in resource-poor countries, ’locally relevant medical training’—teaching primarily locally endemic diseases and practice in scarcity conditions, training in rural communities and admitting rural students preferentially—could help improve retention. Locally relevant training would arguably diminish medical brain drain in five ways. It would (i) make graduates less attractive for Western employers, (ii) align graduates’ expectations with actual practice, diminishing ‘burn-out’, (iii) enhance the professional prestige of local practice, (iv) hold rotations in, and recruit applicants from, rural areas, which is known to improve retention there, and (v) create local career development options that attract practitioners to stay. Such educational reform may raise worries about poor-quality care, breach of the freedom of education and occupation, breach of the freedom of movement, unequal distribution of opportunities among students, hypocrisy and resistance from influential actors. We address these worries

Background Although methods proposed for the conduct of ethics consultation tend to be viewed as competing approaches, they may in fact function in a complementary manner. Methods We describe the experience of ethics consultation in two ethics committees at the University Hospitals of Geneva, Switzerland. Results Both committees provide case consultation by a multi-disciplinary team of committee members, but with different processes. These differences in process do not necessarily lead to differences in outcome. Discussion Different methods of ethics consultation are not mutually exclusive, and can co-exist within the same institution. The practical application of one method of ethics consultation can lead to substantial variations in process between different groups of consultants. Conclusion Despite the importance of clarifying theoretical groundings, and consultation and deliberation processes, in ethics consultation, choosing between different processes may not be pressing. To assist these choices, exploration of the practical strengths and weaknesses of different methods will be necessary to assist clinical ethicists, and clinical ethics committees, in acquiring a flexible and evidence-based set of approaches to their work

Fair resource allocation in humanitarian medicine is gaining in importance and complexity, but remains insufficiently explored. It raises specific issues regarding non-ideal fairness, global solidarity, legitimacy in non-governmental institutions and conflicts of interest. All would benefit from further exploration. We propose that some headway could be made by adapting existing frameworks of procedural fairness for use in humanitarian organizations. Despite the difficulties in applying it to humanitarian medicine, it is possible to partly adapt Daniels and Sabin's ‘Accountability for reasonableness’ to this context. This would require: (1) inclusion of internally explicit decisions and rationales; (2) publicity to donors, local staff, community leaders and governments, as well as frank answers to any beneficiary—or potential beneficiary—who asked for clarification of decisions and their rationale; (3) a consistent reasoning strategy to weigh conflicting views of equity in specific situations; (4) advocacy within the organization as a mechanism for revision and appeals; and (5) internal regulation according to publicly accessible mechanisms. Organizations could generate a common corpus of allocation decisions from which to draw in future similar cases. Importantly, the complexity of these challenges should encourage, rather than hinder, broader discussion on ethical aspects of resource allocation in humanitarian medicine. CiteULike Connotea Del.icio.us What's this?

Institute for Biomedical Ethics, Geneva University Medical School * Corresponding author: Médecins Sans Frontières (OCG), rue de Lausanne 78, CH-1211 Geneva 21, Switzerland. Tel.: +41 (0)22 849 89 29; Fax: +41 (0)22 849 84 88; Email: philippe_calain{at}hotmail.com ' + u + '@' + d + ' '//--> Abstract Outbreaks of filovirus (Ebola and Marburg) hemorrhagic fevers in Africa are typically the theater of rescue activities involving international experts and agencies tasked with reinforcing national authorities in clinical management, biological diagnosis, sanitation, public health surveillance and coordination. These outbreaks can be seen as a paradigm for ethical issues posed by epidemic emergencies, through the convergence of such themes as: isolation and quarantine, privacy and confidentiality and the interpretation of ethical norms across different ethnocultural settings. With an emphasis on the boundaries between public health investigations and research, this article reviews specific challenges, past practices and current normative documents relevant to the application of ethical standards in the course of outbreaks of filovirus hemorrhagic fevers. Aside from commonly identified issues of informed consent and institutional review processes, we argue for more clarity over the specification of which communities are expected to share benefits, and we advocate for the use of collective definitions of duty to care and standard of care. We propose new elaborations around existing normative instruments, and we suggest some pathways toward more comprehensive approaches to the ethics of research in outbreak situations. CiteULike Connotea Del.icio.us What's this?