REASONS TO REDEFINE MORAL DISTRESS: A FEMINIST EMPIRICAL BIOETHICS ANALYSIS

There has been increasing debate in recent years about the conceptualization of moral distress. Broadly speaking, two groups of scholars have emerged: those who agree with Jameton’s ‘narrow definition’ that focuses on constraint and those who argue that Jameton’s definition is insufficient and needs to be broadened. Using feminist empirical bioethics, we interviewed critical care nurses in the United Kingdom about their experiences and conceptualizations of moral distress. We provide our broader definition of moral distress and examples of data that both challenge and support our conceptualization. We pre‐empt and overcome three key challenges that could be levelled at our account and argue that there are good reasons to adopt our broader definition of moral distress when exploring prevalence of, and management strategies for, moral distress.     

WHO'S ARGUING? A CALL FOR REFLEXIVITY IN BIOETHICS

In this paper we set forth what we believe to be a relatively controversial argument, claiming that ‘bioethics’ needs to undergo a fundamental change in the way it is practised. This change, we argue, requires philosophical bioethicists to adopt reflexive practices when applying their analyses in public forums, acknowledging openly that bioethics is an embedded socio‐cultural practice, shaped by the ever‐changing intuitions of individual philosophers, which cannot be viewed as a detached intellectual endeavour. This said, we argue that in order to manage the personal, social and cultural embeddedness of bioethics, philosophical bioethicists should openly acknowledge how their practices are constructed and should, in their writing, explicitly deal with issues of bias and conflict of interest, just as empirical scientists are required to do.     

From the arcane to the mundane: engaging French publics in discussing clinical applications of genomic technology

Genomic technologies are developing at a time when greater public involvement in research and clinical governance is sought. To this end, empirical bioethics studies, although conceptualized as academic endeavors, may draw on the inclusion of laypeople to justify informing policy. Doing so, they face similar concerns as those addressed to public consultations which cannot be termed democratic a priori and may reinforce the authority of experts. We reflect on these concerns in the process of analyzing the results of a qualitative analysis of eight focus groups (64 participants) held in France during 2010–2012, designed to understand laypeople's views of the ethical debates surrounding genomic medicine. We examine how the notions of “lay” and “expert” play in the framework of the study and how participants situate themselves along this divide. This understanding of the social context in which the publics are situated enables a more reflexive and accurate ethical analysis.     

Three challenges for a real people-centred conservation

Many commentators attest to a paradigm shift in biodiversity conservation, away from exclusive protected areas towards more people‐centred or community‐based conservation. This has been referred to as ‘new conservation’. However, new conservation could be thought of as an attempt to re‐label and re‐package conservation and to ‘get people on board’ existing strategies. According to its critics even so‐called new conservation policy, practice and institutions remain expert‐driven, undemocratic and autocratic. I argue that for new conservation to become reality, then more fundamental changes in priority‐setting, decision‐making and organization are required. This paper presents three challenges for a real people‐centred conservation: a more pluralist approach to understanding knowledge and values of different actors, greater deliberation and inclusion in decision‐making, and a remodelling of institutions to support conservation.     

What are the policy priorities for sustaining ecological processes? A case study from Victoria,Australia

Summary Developments in ecological theory indicate that ecological processes have major implications for sustaining biodiversity and the provision of ecosystem services. Consequently, conservation actions that focus solely on particular species, vegetation communities, habitats or sites (‘assets’) are unlikely to be effective over the long term unless the ecological processes that support them continue to function. Efforts to sustain biodiversity must embrace both ‘assets’ and ‘process‐oriented’ approaches. Existing knowledge about ecological processes, incomplete though it is, has not been adequately considered in government decision making. It is, therefore, necessary to consider how to build consideration of ecological processes into legislative and institutional frameworks, policy and planning processes, and on‐ground environmental management. Drawing on insights from interviews, a facilitated workshop, and a literature review, this paper identifies a suite of policy priorities and associated reforms which should assist in ensuring that ecological processes are given more attention in policy‐making processes. It is concluded that a multi‐pronged approach is required, because there are no ‘silver bullets’ for sustaining ecological processes.     

Bioethics and Climate Change: A Response to Macpherson and Valles

Two articles published in Bioethics recently have explored the ways that bioethics can contribute to the climate change debate. Cheryl Cox Macpherson argues that bioethicists can play an important role in the climate change debate by helping the public to better understand the values at stake and the trade‐offs that must be made in individual and social choices, and Sean Valles claims that bioethicists can contribute to the debate by framing the issues in terms of the public health impacts of climate change. While Macpherson and Valles make valid points concerning a potential role for bioethics in the climate change debate, it is important to recognize that much more than ethical analysis and reflection will be needed to significantly impact public attitudes and government policies.     

German law on circumcision and its debate: How an ethical and legal issue turned political

The article aims to illuminate the recent debate in Germany about the legitimacy of circumcision for religious reasons. The aim is both to evaluate the new German law allowing religious circumcision, and to outline the resulting conflict between the surrounding ethical and legal issues. We first elucidate the diversity of legal and medical views on religious circumcision in Germany. Next we examine to what extent invasive and irreversible physical interventions on infant boys unable to given their consent should be carried out for non‐medical reasons. To this end, the potential benefits and harms of circumcision for non‐medical reasons are compared. We argue that circumcision does not provide any benefits for the ‘child as a child’ and poses only risks to boys. We then set out to clarify and analyse political (rather than ethical) justifications of the new circumcision law. We demonstrate through this analysis how the circumcision debate in Germany has been transformed from a legal and ethical problem into a political issue, due at least in part to Germany's unique historical context. Although such a particular political sensibility is entirely comprehensible, it raises particular problems when it comes to framing and responding to medical ethical issues – as in the case of religious circumcision.     

BRAIN DEATH IN ISLAMIC ETHICO‐LEGAL DELIBERATION: CHALLENGES FOR APPLIED ISLAMIC BIOETHICS

Since the 1980s, Islamic scholars and medical experts have used the tools of Islamic law to formulate ethico‐legal opinions on brain death. These assessments have varied in their determinations and remain controversial. Some juridical councils such as the Organization of Islamic Conferences' Islamic Fiqh Academy (OIC‐IFA) equate brain death with cardiopulmonary death, while others such as the Islamic Organization of Medical Sciences (IOMS) analogize brain death to an intermediate state between life and death. Still other councils have repudiated the notion entirely. Similarly, the ethico‐legal assessments are not uniform in their acceptance of brain‐stem or whole‐brain criteria for death, and consequently their conceptualizations of, brain death. Within the medical literature, and in the statements of Muslim medical professional societies, brain death has been viewed as sanctioned by Islamic law with experts citing the aforementioned rulings. Furthermore, health policies around organ transplantation and end‐of‐life care within the Muslim world have been crafted with consideration of these representative religious determinations made by transnational, legally‐inclusive, and multidisciplinary councils. The determinations of these councils also have bearing upon Muslim clinicians and patients who encounter the challenges of brain death at the bedside. For those searching for ‘Islamically‐sanctioned’ responses that can inform their practice, both the OIC‐IFA and IOMS verdicts have palpable gaps in their assessments and remain clinically ambiguous. In this paper we analyze these verdicts from the perspective of applied Islamic bioethics and raise several questions that, if answered by future juridical councils, will better meet the needs of clinicians and bioethicists.     

Paradoxes of ‘public diplomacy’: Ethnographic perspectives on the European Union delegations in the antipodes

‘Public diplomacy’ is a term increasingly used among policy makers and academics, yet its meaning is ambiguous and contested. Advocates proclaim it as a new approach to statecraft entailing a participatory approach of shared meaning‐making between politicians and the public markedly different from the elitist, Machiavellian inter‐governmental practices of traditional (‘Westphalian’) diplomacy. The European Union (EU) has embraced these ideals, proclaiming public diplomacy a cornerstone of European external relations policy. We examine these claims in the context of the EU's delegations to Australia and New Zealand. Using three ethnographic case studies, we highlight discrepancies between official discourses on public diplomacy and its practice. The participatory ideals of EU public diplomacy, we argue, are undermined by the EU's preoccupation with image and branding, public relations and marketing techniques, and continuing reliance on traditional ‘backstage’ methods of diplomacy. We conclude by outlining the implications of these paradoxes for both anthropological research and EU external relations.     

Conflicting demands on a modern healthcare service: Can Rawlsian justice provide a guiding philosophy for the NHS and other socialized health services?

We explore whether a Rawlsian approach might provide a guiding philosophy for the development of a healthcare system, in particular with regard to resolving tensions between different groups within it. We argue that an approach developed from some of Rawls’ principles – using his ‘veil of ignorance’ and both the ‘difference’ and ‘just savings’ principles which it generates – provides a compelling basis for policy making around certain areas of conflict. We ask what policies might be made if those making them did not know if one was patient, doctor, nurse or manager – in this generation or the next. We first offer a brief summary of Rawls’ approach and how we intend to extrapolate from it. We examine how this adapted Rawlsian framework could be applied to specific examples of conflict within healthcare; we demonstrate how this framework can be used to develop a healthcare service which is both sustainable (in its training and treatment of staff, and in encouraging research and innovation) and open (to protect the powers and opportunities of those using the health service). We conclude that while Rawls’ approach has previously been rejected as a means to address specific healthcare decisions, an adapted veil of ignorance can be a useful tool for the consideration of how a just health service should be constructed and sustained. Turning the theoretical into the practical (and combining Rawls’ thought experiment with Scanlonian contractarianism), managers, doctors, patients, carers and nurses could come together and debate conflicting issues behind a hypothetical veil.     

Language and values in the human cloning debate: a web-based survey of scientists and christian fundamentalist pastors

Over the last seven years, a major debate has arisen over whether human cloning should remain legal in the United States. Given that this may be the ‘first real global and simultaneous news story on biotechnology’ (Einsiedel et al., 2002, p. 313), nations around the world have struggled with the implications of this newly viable scientific technology, which is often also referred to as somatic cell nuclear transfer. Since the successful cloning of Dolly the sheep in 1997, and with increasing media attention paid to the likelihood of a successful human reproductive clone coupled with research suggesting the medical potential of therapeutic cloning in humans, members of the scientific community and Christian fundamentalist leaders have become increasingly vocal in the debate over U.S. policy decisions regarding human cloning (Wilmut, 2000). Yet despite a surfeit of public opinion polls and widespread opining in the news media on the topic of human cloning, there have been no empirical studies comparing the views of scientists and Christian fundamentalists in this debate (see Evans, 2002a for a recent study of opinion polls assessing religion and attitudes toward cloning).

In order to further investigate the values that underlie scientists' and Christian fundamentalist leader's understanding of human cloning, as well as their differential use of language in communicating about this issue, we conducted an open-ended, exploratory survey of practicing scientists in the field of molecular biology and Christian fundamentalist pastors. We then analyzed the responses from this survey using qualitative discourse analysis. While this was not necessarily a representative sample (in quantitative terms, see Gaskell & Bauer, 2000) of each of the groups and the response rate was limited, this approach was informative in identifying both commonalities between the two groups, such as a focus on ethical concerns about reproductive cloning and the use of scientific terminology, as well as significant differences including concerns over ‘playing God’ for the Christian pastors, focus on therapeutic cloning by scientists, and subtle but informative differences between the two groups in their use of scientific terminology and their interpretations of human cloning as scientific progress.     

FROM INTEGRATIVE BIOETHICS TO PSEUDOSCIENCE

Integrative bioethics is a brand of bioethics conceived and propagated by a group of Croatian philosophers and other scholars. This article discusses and shows that the approach encounters several serious difficulties. In criticizing certain standard views on bioethics and in presenting their own, the advocates of integrative bioethics fall into various conceptual confusions and inconsistencies. Although presented as a project that promises to deal with moral dilemmas created by modern science and technology, integrative bioethics does not contain the slightest normativity or action‐guiding capacity. Portrayed as a scientific and interdisciplinary enterprise, integrative bioethics displays a large number of pseudoscientific features that throw into doubt its overall credibility.     

BALANCING LIBERATION AND PROTECTION: A MODERATE APPROACH TO ADOLESCENT HEALTH CARE DECISION‐MAKING

In this paper I examine the debate between ‘protectionists’ and ‘liberationists’ concerning the appropriate role of minors in decision‐making about their health care, focusing particularly on disagreements between the two sides regarding adolescents. Protectionists advocate a more traditional, paternalistic approach in which minors have relatively little input into the healthcare decision‐making process, and decisions are made for them by parents or other adults, guided by a commitment to the patient's best interests. Liberationists, on the other hand, argue in favour of expanded participation by minors in treatment decisions, and decision‐making authority for at least some adolescents. My examination of the debate includes discussion of liberationist shifts that have taken place in the medical community as well as in legal policy and practice, and consideration of recent research on adolescent development. In the final section of the paper, I propose a moderate position that addresses both liberationist and protectionist concerns.     

NEW DIRECTIONS IN AFRICAN BIOETHICS: WAYS OF INCLUDING PUBLIC HEALTH CONCERNS IN THE BIOETHICS AGENDA

Research ethics is the most developed aspect of bioethics in Africa. Most African countries have set up Institutional Review Boards (IRBs) to provide guidelines for research and to comply with international norms. However, bioethics has not been responsive to local needs and values in the rest of the continent. A new direction is needed in African bioethics. This new direction promotes the development of a locally‐grounded bioethics, shaped by a dynamic understanding of local cultures and informed by structural and institutional problems that impact the public's health, as well as cognisant of the salient contribution of social sciences and social epidemiology which can bring a lasting impact on African local communities. In today's post‐Structural Adjustment Africa, where healthcare has been liberalized and its cost increased, a bioethics agenda that focuses essentially on disease management and clinical work remains blind in the face of a structural marginalization of the masses of poor. Instead, the multidimensional public health crisis, with which most African countries are confronted, calls for a bioethics agenda that focuses primarily, but not exclusively, on health promotion and advocacy. Such an approach to bioethics reckons with the macro‐determinants of health and well‐being and places clinical and research ethics in the broader context of population's health. The same approach underscores the need to become political, not only by addressing health policymaking processes and procedures, but also by becoming an advocacy forum that includes other constituencies equipped with the potentialities to impact the population's health.     

Conflicts of interest in e-cigarette research: A public good and public interest perspective

The tobacco industry’s involvement in the electronic cigarette research that informs public health policy is controversial. On the one hand, some are concerned that their involvement presents conflicts of interest that bias research outputs and invalidate the policies that use them. On the other hand, some have argued that the tobacco industry may support valid research and contribute to the goals of public health, for instance, if the interests of the e-cigarette industry could be part of a tobacco smoking cessation policy. We approach this debate from the ethical perspective of the public interest and the public good, considering how legitimate researchers can square their expert opinion with validating tobacco industry-funded research, given the perfidy of the tobacco industry and paucity of robust, conclusive evidence on the public health impacts of liberalizing e-cigarette use.     

HOW WILL THE ECONOMIC DOWNTURN AFFECT ACADEMIC BIOETHICS?

An educated guess about the future of academic bioethics can only be made on the basis of the historical conditions of its success. According to its official history, which attributes its success primarily to the service it has done for the patient, it should be safe at least as long as the patient still needs its service. Like many other academic disciplines, it might suffer under the present economic downturn. However, in the plausible assumption that its social role has not been exhausted yet, it should recover as soon as the economy does. But if, as this paper tries to argue, the success of academic bioethics should be attributed first and foremost to the service it has done for the neoliberal agenda, then its future would have to depend on the fate of the latter. The exact implications of the downturn for the neoliberal agenda are obviously impossible to predict. Among the various options, however, the one of going back to ‘normal’ seems to be the least likely. The other options suggest that the future of academic bioethics, as we have known it, is bleak.     

Agricultural land use and Skylark Alauda arvensis: a case study linking a habitat association model to spatially explicit change scenarios

The development of forward scenarios is a useful method of envisaging the environmental implications of potential changes in land use, as a tool for policy development. In this paper, a spatially explicit case study is used to provide insight into the environmental impacts of Common Agricultural Policy reform on Skylark Alauda arvensis, a species which is widespread on arable farmland, breeds in crops and has declined in recent decades. A generalized linear mixed model was used to estimate Skylark breeding population densities in different crops, using survey data collected from farms in the east of England, supplemented by the literature. Model outputs were then used to predict Skylark densities in an East Anglian Joint Character Area dominated by arable cropping. Predicted densities were mapped at field level using GIS, based on actual cropping derived from Integrated Administration and Control System data collected for the administration of subsidy payments. Three future scenarios were then created, based on expert opinion of potential changes in cropping over the next 5 years, and potential changes in Skylark density mapped on the basis of the predicted changes in cropping patterns. Overall, Skylark densities were predicted to decrease on average by 11–14% under ‘market‐led’ (increasing wheat and oilseed rape, reduced set‐aside) and ‘energy crop’ (5% area under short rotation coppice) scenarios, but remained virtually unchanged under an ‘environment‐led’ (diverse cropping) scenario. The ‘market‐led’ scenario is closest to short‐term agricultural trajectories, but wider cultivation of biomass energy crops as modelled under the ‘energy crop’ scenario could occur in the medium term if energy policies are favourable. Appropriate mitigation strategies therefore need to be implemented if a continued decline in the Skylark population on lowland arable farmland is to be averted. The results provide a readily accessible visualization of the potential impacts of land‐use change for policy‐makers; similar techniques could be applied to visualize effects of changes arising through other drivers, including climate change.     

Empirical research in clinical ethics: The ‘committed researcher’ approach

After the ‘empirical turn’ in bioethics, few specific approaches have been developed for doing clinical ethics research in close connection with clinical decision-making on a daily basis. In this paper we describe the ‘committed researcher’ approach to research in clinical ethics that we have developed over the years. After comparing it to two similar research methodological approaches, the ‘embedded researcher’ and ‘deliberative engagement’, we highlight its main features: it is patient-oriented, it is implemented by collegial and multidisciplinary teams, it uses an ethical grid to build the interview guide, and it is geared towards bringing the results to bear on the public debate surrounding the issue at stake. Finally, we position our methodological approach with respect to the ‘is vs. ought’ distinction. We argue that our ‘commitment researcher’ approach to clinical ethics research takes concerned people’s life-building values as the main data, and compares them to the larger normative framework underlying the medical practice at stake.