Many commentators today lament the politicization of bioethics, but some suggest distinguishing among different kinds of politicization. This essay pursues that idea with reference to three traditions of political thought: liberalism, communitarianism, and republicanism. After briefly discussing the concept of politicization itself, the essay examines how each of these political traditions manifests itself in recent bioethics scholarship, focusing on the implications of each tradition for the design of government bioethics councils. The liberal emphasis on the irreducible plurality of values and (...) interests in modern societies, and the communitarian concern with the social dimensions of biotechnology, offer important insights for bioethics councils. The essay finds the most promise in the republican tradition, however, which emphasizes institutional mechanisms that allow bioethics councils to enrich but not dominate public deliberation, while ensuring that government decisions on bioethical issues are publicly accountable and contestable. (shrink)

Background The potential contribution of community engagement to addressing ethical challenges for international biomedical research is well described, but there is relatively little documented experience of community engagement to inform its development in practice. This paper draws on experiences around community engagement and informed consent during a genetic cohort study in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research practice, focusing on issues of communication, the role of field workers in 'doing ethics' (...) on the ground and the challenges of community consultation. Methods The findings are based on action research methods, including analysis of community engagement documentation and the observations of the authors closely involved in their development and implementation. Qualitative and quantitative content analysis has been used for documentation of staff meetings and trainings, a meeting with 24 community leaders, and 40 large public and 70 small community group meetings. Meeting minutes from a purposive sample of six community representative groups have been analysed using a thematic framework approach. Results Field workers described challenges around misunderstandings about research, perceived pressure for recruitment and challenges in explaining the study. During consultation, leaders expressed support for the study and screening for sickle cell disease. In community meetings, there was a common interpretation of research as medical care. Concerns centred on unfamiliar procedures. After explanations of study procedures to leaders and community members, few questions were asked about export of samples or the archiving of samples for future research. Conclusions Community engagement enabled researchers to take account of staff and community opinions and issues during the study and adapt messages and methods to address emerging ethical challenges. Field workers conducting informed consent faced complex issues and their understanding, attitudes and communication skills were key influences on ethical practice. Community consultation was a challenging concept to put into practice, illustrating the complexity of assessing information needs and levels of deliberation that are appropriate to a given study. (shrink)

Over recent years, science and technology have been reassessed increasingly in ethical terms. Particularly for life science governance, ethics has become the dominant discourse. In the course of this ‘‘ethical turn’’ national ethics councils were set up throughout Europe and in the United States to advice politics in ethically controversial issues such as stem cell research and genetic testing. Ethics experts have become subject to traditional warnings against expertocracy: they are suspected to unduly influence political decision-making. However, any reliable ethics (...) expertise has to reflect societal disagreements in moral issues. Therefore, expert dissent is a normal feature of legitimate ethics expertise. Based on theoretical considerations we argue that in principle, expert dissent does not cause problems for political legitimacy; rather, it enhances the salience of politics: obviously decisions on ethical issues cannot be taken on the basis of expert knowledge alone. We therefore conclude that expert dissent, not consent, supports politics. Focussing on Germany and Austria, we show how politics deal with expert dissent in practice. While in Germany politics acknowledge dissent and use it to foster a fundamental political debate, Austrian politics attribute authoritative power to ethics expertise and try to construct an overall consensus. This illustrates how the drawing of boundaries between politic and expertise differs. (shrink)

BackgroundThe potential contribution of community engagement to addressing ethical challenges for international biomedical research is well described, but there is relatively little documented experience of community engagement to inform its development in practice. This paper draws on experiences around community engagement and informed consent during a genetic cohort study in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research practice, focusing on issues of communication, the role of field workers in 'doing ethics' on (...) the ground and the challenges of community consultation.MethodsThe findings are based on action research methods, including analysis of community engagement documentation and the observations of the authors closely involved in their development and implementation. Qualitative and quantitative content analysis has been used for documentation of staff meetings and trainings, a meeting with 24 community leaders, and 40 large public and 70 small community group meetings. Meeting minutes from a purposive sample of six community representative groups have been analysed using a thematic framework approach.ResultsField workers described challenges around misunderstandings about research, perceived pressure for recruitment and challenges in explaining the study. During consultation, leaders expressed support for the study and screening for sickle cell disease. In community meetings, there was a common interpretation of research as medical care. Concerns centred on unfamiliar procedures. After explanations of study procedures to leaders and community members, few questions were asked about export of samples or the archiving of samples for future research.ConclusionsCommunity engagement enabled researchers to take account of staff and community opinions and issues during the study and adapt messages and methods to address emerging ethical challenges. Field workers conducting informed consent faced complex issues and their understanding, attitudes and communication skills were key influences on ethical practice. Community consultation was a challenging concept to put into practice, illustrating the complexity of assessing information needs and levels of deliberation that are appropriate to a given study. (shrink)

Recent advances in our understanding of the human genome have raised high hopes for the creation of personalized medicine able to predict diseases well before they occur, or that will lead to individualized and therefore more effective treatments. This possibility of a more accurate science of the prevention and surveillance of disease also illuminates the field of public health, where the translation of genomic knowledge could provide tools enhancing the capacity of public health authorities to promote health and prevent diseases. (...) But beyond scientific considerations, the use of genomics in public health research and interventions gives rise to several ethical and social issues of great importance. Considering the impact that PHG could have on the future of public health while still paying attention to the uncertainty surrounding the use of genomic databases for the benefit of populations, this article seeks to explore the promise of genomics in public health and the ethical issues that emerge from its application. (shrink)

Many commentators today lament the politicization of bioethics, but some suggest distinguishing among different kinds of politicization. This essay pursues that idea with reference to three traditions of political thought: liberalism, communitarianism, and republicanism. After briefly discussing the concept of politicization itself, the essay examines how each of these political traditions manifests itself in recent bioethics scholarship, focusing on the implications of each tradition for the design of government bioethics councils. The liberal emphasis on the irreducible plurality of values and (...) interests in modern societies, and the communitarian concern with the social dimensions of biotechnology, offer important insights for bioethics councils. The essay finds the most promise in the republican tradition, however, which emphasizes institutional mechanisms that allow bioethics councils to enrich but not dominate public deliberation, while ensuring that government decisions on bioethical issues are publicly accountable and contestable. (shrink)

Here, I investigate the challenges involved in addressing ethical questions related to food policy, food security, and climate change in a public engagement atmosphere where “experts” (e.g., scientists and scholars), policy-makers and laypersons interact. My focus is on the intersection between food and climate in the state of Alaska, located in the circumpolar north. The intersection of food security and climate represents a “wicked problem.” This wicked problem is plagued by “unruliness,” characterized by disruptive mechanisms that can impede how ethical (...) issues in policy-making are broached. Unruliness is exacerbated by conditions of engagement that can be characterized as occurring in a “fog.” In this fog, interlocutors encounter both moral and epistemological conundrums. In considering how to mitigate unruliness, a bottom-up approach is recommended. I discuss “taming” strategies for addressing these ethical concerns; modest suggestions on what should be taken into count when confronting issues of science and ethics within the context of promoting greater deliberative discourse regarding food security issues at more local levels. My recommendations are made in light of developments in food policy in Alaska and may be instructive for other regions pursuing cold climate agricultural expansion, for example. (shrink)

Antimicrobial resistance is a growing public health concern and is associated with the over - or inappropriate use of antimicrobials in both humans and agriculture. While there has been recognition of this problem on the part of agricultural and public health authorities, there has nonetheless been significant difficulty in translating policy recommendations into practical guidelines. In this paper, we examine the process of public health policy development in Quebec agriculture, with a focus on the case of pork production and the (...) role of food animal veterinarians in policy making. We argue that a tendency to employ strictly techno- scientific risk analyses of antimicro- bial use ignores the fundamental social, economic and political realities of key stakeholders and so limits the applicability of policy recommendations developed by government advisory groups. In particular, we suggest that veterinarians’ personal and professional interests, and their ethical norms of practice, are key factors to both the problem of and the solution to the current over -reliance on antimicrobials in food production. (shrink)