Getting personal on overdiagnosis: On defining overdiagnosis from the perspective of the individual person

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Global Health: Issues, Challenges, and Global Action

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Health and security: ethical principles for counter-terror policy and practice in protection crises and beyond

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Introduction: ethics, national security, and global health

With national security a top priority around the world and righteous indignation among the public and global health communities ignited by the increased use of drones and other airstrikes and the use of a vaccination programme in the covert operation conducted to capture Osama bin Laden, ethical questions concerning the implications for health of security policies and practices demand renewed attention. In a workshop at the Fondation Brocher in Geneva, members of humanitarian aid organizations, a former United States Assistant Secretary of State, health professionals, a legal scholar and a few philosophers gathered to explore some of these questions. Here we offer some of the fruits from our workshop and subsequent discussions and reflections.

In the first essay, Jonathan Marks thoroughly examines steps taken in the wake of torture revelations during the Bush administration, and argues for investing resources in physicians and other health professionals to help prevent future abuses. Lisa Eckenwiler and Matthew Hunt highlight the obligation to consider the health implications of particular policies and operations, and propose a specific set of ethical principles and practices to assist intelligence and other national security officials in decision-making. Finally, Ryoa Chung examines the debate surrounding the securitization of health and whether this discourse linking health to security serves to undermine or advance global health equity.

When we met in Geneva, counter-terror efforts were the focus of growing scrutiny, mostly out of concern for civilian casualties and a perceived lack of transparency. As we submit these essays, the global political landscape has shifted towards greater nationalism, with counter-terrorism efforts only intensifying. Rigorous discussion and the promulgation of principles seems all the more pressing.

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Which will Trump: human rights and professional ethics, or torture redux?

Recent political developments in the United States raise concerns about the potential return of aggressive interrogation strategies, particularly in the event of another large-scale terror attack on the U.S. mainland. This essay reviews various legal, ethical and policy responses to revelations of torture during the Bush administration. It asks whether they improve the prospect that, in future, human rights will trump torture, not vice versa. The essay argues that physicians could help prevent further abuses – especially given their access, social status and expertise – but that insufficient steps have been taken to empower them to do so.

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Health system effects of implementing integrated community case management (iCCM) intervention in private retail drug shops in South Western Uganda: a qualitative study

Abstract

Background

Intervening in private drug shops to improve quality of care and enhance regulatory oversight may have health system effects that need to be understood before scaling up any such interventions. We examine the processes through which a drug shop intervention culminated in positive unintended effects and other dynamic interactions within the underlying health system.

Methods

A multifaceted intervention consisting of drug seller training, supply of diagnostics and subsidised medicines, use of treatment algorithms, monthly supervision and community sensitisation was implemented in drug shops in South Western Uganda, to improve paediatric fever management. Focus group discussions and in-depth interviews were conducted with stakeholders (drug sellers, government officials and community health workers) at baseline, midpoint and end-line between September 2013 and September 2015. Using a health market and systems lens, transcripts from the interviews were analysed to identify health system effects associated with the apparent success of the intervention.

Findings

Stakeholders initially expressed caution and fears about the intervention's implications for quality, equity and interface with the regulatory framework. Over time, these stakeholders embraced the intervention. Most respondents noted that the intervention had improved drug shop standards, enabled drug shops to embrace patient record keeping, parasite-based treatment of malaria and appropriate medicine use. There was also improved supportive supervision, and better compliance to licensing and other regulatory requirements. Drug seller legitimacy was enhanced from the community and client perspective, leading to improved trust in drug shops.

Conclusion

The study showed how effectively using health technologies and the perceived efficacy of medicines contributed to improved legitimacy and trust in drug shops among stakeholders. The study also demonstrated that using a combination of appropriate incentives and consumer empowerment strategies can help harmonise common practices with medicine regulations and safeguard public health, especially in mixed health market contexts.

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Integrated community case management by drug sellers influences appropriate treatment of paediatric febrile illness in South Western Uganda: a quasi-experimental study

Abstract

Background:

Fever case management is a major challenge for improved child health globally, despite existence of cheap and effective child survival health technologies. The integrated Community Case Management (iCCM) inter-vention of paediatric febrile illnesses though adopted by Uganda’s Ministry of Health to be implemented by com-munity health workers, has not addressed the inaccess to life-saving medicines and diagnostics. Therefore, the iCCM intervention was implemented in private drug shops and evaluated for its effect on appropriate treatment of paediat-ric fever in a low malaria transmission setting in South Western Uganda

Methods:

From June 2013 to September 2015, the effect of the iCCM intervention on drug seller paediatric fever management and adherence to iCCM guidelines was assessed in a quasi-experimental study in South Western Uganda. A total of 212 care-seeker exit interviews were done before and 285 after in the intervention arm as com-pared to 216 before and 268 care-seeker interviews at the end of the study period in the comparison arm. The inter-vention effect was assessed by difference-in-difference analysis of drug seller treatment practices against national treatment recommendations between the intervention and comparison arms. Observed proportions among care-seeker interviews were compared with corresponding proportions from 5795 child visits recorded in patient registries and 49 direct observations of drug seller–care-seeker encounters in intervention drug shops

Results:

The iCCM intervention increased the appropriate treatment of uncomplicated malaria, pneumonia symp-toms and non-bloody diarrhoea by 80.2% (95% CI 53.2–107.2), 65.5% (95% CI 51.6–79.4) and 31.4% (95% CI 1.6–61.2), respectively. Within the intervention arm, drug seller scores on appropriate treatment for pneumonia symptoms and diagnostic test use were the same among care-seeker exit interviews and direct observation. A linear trend (negative slope, − 0.009 p value < 0.001) was observed for proportions of child cases prescribed any antimicrobial medicine in the intervention arm drug shops.

Conclusions:

The iCCM intervention improved appropriate treatment for uncomplicated malaria, pneumonia symptoms and diarrhoea. Drug seller adherence to iCCM guidelines was high, without causing excessive prescription of antimicrobial medicines in this study. Further research should assess whether this effect is sustained over time and under routine supervision models.

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Special Issue: Neuroethics: Neuroscience's Contributions to Bioethics

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Marketing of unproven stem cell–based interventions: A call to action

Commercial promotion of unsupported therapeutic uses of stem cells is a global problem that has proven resistant to regulatory efforts. Here, we suggest a coordinated approach at the national and international levels focused on engagement, harmonization, and enforcement to reduce the risks associated with direct-to-consumer marketing of unproven stem cell treatments.

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Attending Medicine, Mindfulness and Humanity

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Hospital physician payment mechanisms in Austria: do they provide gateways to institutional corruption?

Institutional corruption in the health care sector has gained considerable attention during recent years, as it acknowledges the fact that service providers who are acting in accordance with the institutional and environmental settings can nevertheless undermine a health care system’s purposes as a result of the (financial) conflicts of interest to which the service providers are exposed. The present analysis aims to contribute to the examination of institutional corruption in the health sector by analyzing whether the current payment mechanism of separately remunerating salaried hospital physicians for treating supplementary insured patients in public hospitals, in combination with the public hospital physician’s possibility of taking up dual practice as a self-employed physician with a private practice and/or as an attending physician in private hospitals, has the potential to undermine the primary purposes of the Austrian public health care system. Based on the analysis of the institutional design of the Austrian public hospital sector, legal provisions and directives have been identified, which have the potential to promote conduct on the part of the public hospital physician that systematically undermines the achievement of the Austrian public health system’s primary purposes.

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Assisted Dying & Disability

This article explores at least two dominant critiques of assisted dying from a disability rights perspective. In spite of these critiques, I conclude that assisted dying ought to be permissible. I arrive at the conclusion that if we respect and value people with disabilities, we ought to permit assisted dying. I do so in the following manner. First, I examine recent changes in legislation that have occurred since the Royal Society of Canada Expert Panel on End-of-Life Decision-Making report, published in this journal. I suggest that these changes are likely to only strengthen opposition to assisted dying from disability rights activists and people with disabilities. Second, I focus on respect for people with disabilities and in particular, respect for their autonomy and decision-making abilities. Third, I explore the opposition to assisted dying that focuses on risk and the vulnerability of people with disabilities. Here I suggest that this risk ought not to be of special concern. Ultimately, I conclude that upholding respect for the disabled requires the legalization of assisted dying, rather than the denial of access in a misguided effort to protect people with disabilities.

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Kinship, law and religion An anthropological study of assisted reproductive technologies in Iran

Since the first IVF birth in 1990, the Iranian medical community has not only given full support to the use and development of assisted reproductive technology but has aided the emergence of a powerful, locally-trained body of medical practitioners and biomedical researchers. At the same time, from a religious point of view, most Shia legal authorities – differences of opinion notwithstanding – have taken a relatively permissive view and generally support assisted reproductive technology, including procedures that involve egg, sperm and embryo donation as well as surrogacy arrangements under certain conditions. An examination of the social, legal and ethical aspects of the development and implementation of these technologies in Iran is the subject of this book. It is based on a combination of extensive ethnographic research and textual analysis of important academic and religious seminary publications in Iran, from Shia jurisprudence (fiqh) and Persian histories to the analysis of laws and verdicts.

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ETHICAL AND ANTHROPOLOGICAL ASPECTS OF THE EMERGING FIELD OF NEUROPROSTHETICS

The aim of this book is to present the rapidly expanding field of neuroprosthetics, which at first site may give the impression that it does not raise any novel ethical issues. However, this way of thinking does not take into consideration the complete and integrated picture of the implications that are associated with neuroprosthetics. This particular technology has often been analysed only as technology “per se”, when implanted, excluding the discussion of the social implications and social context. Therefore, the author takes within this ethical and anthropological analysis a broader approach also integrating in his analysis the social implications, i.e. the social context in which technology is immersed.

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Enthusiastic portrayal of 3D bioprinting in the media: Ethical side effects

There has been a surge in mass media reports extolling the potential for using three-dimensional printing of biomaterials (3D bioprinting) to treat a wide range of clinical conditions. Given that mass media is recognized as one of the most important sources of health and medical information for the general public, especially prospective patients, we report and discuss the ethical consequences of coverage of 3D bioprinting in the media. First, we illustrate how positive mass media narratives of a similar biofabricated technology, namely the Macchiarini scaffold tracheas, which was involved in lethal experimental human trials, influenced potential patient perceptions. Second, we report and analyze the positively biased and enthusiastic portrayal of 3D bioprinting in mass media. Third, we examine the lack of regulation and absence of discussion about risks associated with bioprinting technology. Fourth, we explore how media misunderstanding is dangerously misleading the narrative about the technology.

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Between Policy and Practice: Interdisciplinary Perspectives on Assisted Reproductive Technologies and Equitable Access to Health Care

The articles in this Symposium are the product of an interdisciplinary meeting ‘Between Policy and Practice: Interdisciplinary Perspectives on Assisted Reproductive Technologies and Equitable Access to Health Care’, which was held at the Brocher Foundation, Hermance, Switzerland, 5–7 July, 2015.

The Symposium brought together a diverse, interdisciplinary group of scholars and experts involved in research, publication and advocacy work in the area of assisted reproductive technology (ART) policy, healthcare policy, bioethics, patient rights, and patient experiences with ART. Our aim in organizing the Symposium was to examine ART in Europe from a multi-disciplinary as well as a cross-national perspective, and consider ways in which ART health policies could be improved and harmonized with specific legislative solutions and advocacy efforts. In addition to policy questions, we were also interested in engaging with current debates about 'on the ground' experiences and challenges in clinical and advocacy areas, ethical concerns, and directions for future scholarship. The Symposium therefore convened both scholars and nongovernmental organization advocates, with a range of speakers covering five disciplinary areas: (i) medical anthropology, (ii) bioethics, (iii) law, (iv) sociology, and (v) health advocacy. Moreover, participants’ expertise included experiences and research from a range of geopolitical contexts, from nations that currently have comprehensive ART policies to those that have recently introduced and/or inadequate regulation or subsidies for infertility care.

This Brocher Symposium encompassed 4 specific goals: (i) to identify the key areas of concern regarding the legal, ethical, health, and social impacts of inadequate ART regulation and reimbursement, (ii) to isolate and discuss practical effects of implementing specific policies in particular national contexts in European nations, (iii) to identify the advantages and challenges of particular policy solutions regarding ART by comparing policy and provision in various European nations, and (iv) to establish which advocacy efforts are both feasible and effective in different socio-political contexts with the goal of improving equitable access to reproductive health and rights.

The papers, which were presented during the meeting, address these goals, and in particular focus on various forms of mobility and transformation: patients travelling to seek care, emerging new actors, changing legal systems, and transformation of the terms and concepts of ART debates. As we suggest, ART should be recognized not as a stable field or concept, but as dynamic assemblages (Collier and Ong, 2005) between and beyond the countries, policies and practices. Charis Thompson argues for an understanding of ART in the clinical context as an ‘ontological choreography’ which displays ‘the dynamic coordination of the technical, scientific, kinship, gender, emotional, legal, political, and financial aspects of ART clinics’ (Thompson, 2005, 8). We suggest that this dynamic coordination also has a place in the larger assemblages outside of the ART clinics, in the domains of regulation, advocacy, and transnational circulation of discourses, healthcare services, and patients.

An important thread that runs through most papers in this Symposium is the question: What is the role of the state in a liberal democracy in shaping/ensuring access to healthcare and regulating its safety, but also in dealing with questions of equality and discrimination in this arena? Fundamentally, many of the papers lead us to ask how to address collective forms of suffering in an era of individualized responsibility promoted by neoliberal ideals about self-care as a way to justify cutbacks in social services, healthcare included. The role of the state links with complex questions of national sovereignty to shape national policy according to the local cultural and historical specificities, especially within the EU, whereas Jill Allison (Allison, this volume) by way of contrast shows, some transnational conventions apply, including human rights. But we can also ask: What is the role of the supranational legal system in shaping policies at the national level when such policies vary dramatically? What about the role of the World Health Organization (WHO) and other international health actors? To address this question, Charis Thompson (2015)) proposes to launch a multidisciplinary international data collection project to first arm ourselves with data on inequities, then pursue ways of remedying more concrete examples of inequities, but the question arises – is this a vision for supranational or national-level governance? In contrast, it might be reasonable to argue, as Guido Pennings (2015)) has, that a uniform European legislation is impossible and ethnocentric, and that cross-border reproductive care (CBRC) is the solution to uneven regulation as patients seek what they need across national borders. But should we essentially agree with the inequalities experienced on the ground? What about the exploitation of some poorer nations with less restrictive laws? After all, as patients take advantage of inexpensive infertility care by traveling abroad (for example to Eastern European nations), the local population there might find the same care unaffordable because of lack of state subsidies for infertility treatment. What is affordable to foreigners therefore becomes at the same time emblematic of structural inequalities and particular politics of morality at play in the local healthcare systems (Mishtal, 2015). The export side of this cross-border equation also raises concerns. If we agree that CBRC is the answer to uneven access, will we become like the ‘old people’ in Norway, described by Renate Kurszus (2015)), who prefer to ‘export’ their health and social problem to be remedied by other states? Or will this be, as Pennings (2015)) argues, a rather democratic free flow of services and a kind of homeostatic distributive justice where local cultural specificities can be respected via diverse laws (restrictive or otherwise), while at the same time seekers of ART can find services in a country as suits their needs?

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Insurance Economics

Insurance Economics brings together the economic analysis of decision making under risk, risk management and demand for insurance by individuals and corporations, objectives pursued and management tools used by insurance companies, the regulation of insurance, and the division of labor between private and social insurance. Appropriete both for advanced undergraduate and graduate students of economics, management, and finance, this text provides the background required to understand current research. Predictions derived from theoretical argument are not only stated but confronted with empirical evidence. Throughout the book, conclusions summarize results, helping readers to check their knowledge and understanding. Issues discussed include paradoxa in decision making under risk, selection of favorable risks by insurers, the possibility of a "death spiral" in insurance markets, and future challenges such as re-regulation in the wake of the 2007-09 financial crisis and the increasing availability of generic information.

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Cybergenetics. Health Genetics & New Media

Online genetic testing services are increasingly being offered to consumers who are becoming exposed to, and knowledgeable about, new kinds of genetic technologies, as the launch of a 23andme genetic testing product in the UK testifies. Genetic research breakthroughs, cheek swabbing forensic pathologists and celebrities discovering their ancestral roots are littered throughout the North American, European and Australasian media landscapes. Genetic testing is now capturing the attention, and imagination, of hundreds of thousands of people who can not only buy genetic tests online, but can also go online to find relatives, share their results with strangers, sign up for personal DNA-based musical scores, and take part in research. This book critically examines this market of direct-to-consumer (DTC) genetic testing from a social science perspective, asking, what happens when genetics goes online?

With a focus on genetic testing for disease, the book is about the new social arrangements which emerge when a traditionally clinical practice (genetic testing) is taken into new spaces (the internet). It examines the intersections of new genetics and new media by drawing from three different fields: internet studies; the sociology of health; and science and technology studies.

While there has been a surge of research activity concerning DTC genetic testing, particularly in sociology, ethics and law, this is the first scholarly monograph on the topic, and the first book which brings together the social study of genetics and the social study of digital technologies. This book thus not only offers a new overview of this field, but also offers a unique contribution by attending to the digital, and by drawing upon empirical examples from our own research of DTC genetic testing websites (using online methods) and in-depth interviews in the United Kingdom with people using healthcare services.

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Carrier testing in children and adolescents

Many international guidelines recommend that carrier testing in minors should be postponed either until the age of majority or until the child can be actively involved in the decision making process. Although a number of high school programs exist which provide carrier screening to adolescents in at-risk populations, recent guidelines published by the American Society of Human Genetics do not advocate this testing. Despite this, there are some circumstances in which carrier testing does occur in minors. This testing might be intentional, in which identification of carrier status is the goal of the test, or unintentional, where carrier status is identified as a by-product of testing. In this review we outline the situations in which carriers may be identified in childhood and the positions of professional guidelines that address carrier testing in children. We then review the arguments for and against carrier testing presented in the literature and compare this to the empirical evidence in this field.

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Hoping to Help: The Promises and Pitfalls of Global Health Volunteering

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