Background Consent policies for post-mortem organ procurement (OP) vary throughout Europe, and yet no studies have empirically evaluated the ethical implications of contrasting consent models. To fill this gap, we introduce a novel indicator of governance quality based on the ideal of informed support, and examine national differences on this measure through a quantitative survey of OP policy informedness and preferences in seven European countries. -/- Methods Between 2017–2019, we conducted a convenience sample survey of students (n = 2006) in (...) Austria (AT), Belgium (BE), Denmark (DK), Germany (DE), Greece (GR), Slovenia (SI) and Spain (ES), asking participants about their donation preferences, as well as their beliefs and views about the policy in place. From these measures, we computed indices of informedness, policy support, and fulfilment of unexpressed preferences, which we compared across countries and consent systems. -/- Results Our study introduces a tool for analyzing policy governance in the context of OP. Wide variation in policy awareness was observed: Most respondents in DK, DE, AT and BE correctly identified the policy in place, while those in SI, GR and ES did not. Respondents in opt-out countries (AT, BE, ES and GR) tended to support the policy in place (with one exception, i.e., SI), whereas those in opt-in countries (DE and DK) overwhelmingly opposed it. These results reveal stark differences in governance quality across countries and consent policies: We found a preponderance of informed opposition in opt-in countries and a general tendency towards support–either informed or uninformed–in opt-out countries. We also found informed divergence in opt-in countries and a tendency for convergence–either informed or uninformed–among opt-out countries. -/- Conclusion Our study offers a novel tool for analyzing governance quality and illustrates, in the context of OP, how the strengths and weaknesses of different policy implementations can be estimated and compared using quantitative survey data. (shrink)

The American Journal of Bioethics, Volume 11, Issue 7, Page 57-59, July 2011.

In her target article “Shared health governance” (AJOB 11(7): 32-45, 2011) and in her book Health and Social Justice (2009), Jennifer Prah Ruger defends an original model of governance dubbed “Shared Health Governance” (SHG). This model borrows elements from many other models of governance, and one may wonder what is the secret sauce that holds together these diverse ingredients. In response, Ruger would perhaps ultimately turn to public moral norms. My comment raises some concerns about the function and content of (...) these norms in her model and their connection to her claims about shared sovereignty within SHG. (shrink)

While there is a growing body of work on moral issues and global governance in the fields of global justice and international relations, little work has connected principles of global health justice with those of global health governance for a theory of global health. Such a theory would enable analysis and evaluation of the current global health system and would ethically and empirically ground proposals for reforming it to more closely align with moral values. Global health governance has been framed (...) as an issue of national security, human security, human rights, and global public goods. The global health governance literature is essentially untethered to a theorized framework to illuminate or evaluate governance. This article ties global health justice and ethics to principles for governing the global health realm, developing a theoretical framework for global and domestic institutions and actors. (shrink)

There are various reasons why efforts to promote “support for self-management” have rarely delivered the kinds of sustainable improvements in healthcare experiences, health and wellbeing that policy leaders internationally have hoped for. This paper explains how the basis of failure is in some respects built into the ideas that underpin many of these efforts. When support for self-management is narrowly oriented towards educating and motivating patients to adopt the behaviours recommended for disease control, it implicitly reflects and perpetuates limited and (...) somewhat instrumental views of patients. It tends to: restrict the pursuit of respectful and enabling ‘partnership working’; run the risk of undermining patients’ self-evaluative attitudes ; limit recognition of the supportive value of clinician-patient relationships; and obscure the practical and ethical tensions that clinicians face in the delivery of support for self-management. We suggest that a focus on enabling people to live well with their long-term conditions is a promising starting point for a more adequate conception of support for self-management. We then outline the theoretical advantages that a capabilities approach to thinking about living well can bring to the development of an account of support for self-management, explaining, for example, how it can accommodate the range of what matters to people for living well, help keep the importance of disease control in perspective, recognize social influences on people’s values, behaviours and wellbeing, and illuminate more of the rich potential and practical and ethical challenges of supporting self-management in practice. (shrink)

Jennifer Prah Ruger (2011) rightly points out that social cooperation is essential for achieving health justice. But she is unhappy with the approach to cooperation that social scientists and philosophers have taken. Her main objection is that their models are based on narrow self-interest. Her own proposal, which she calls "shared health governance", is based on public moral norms instead. If individuals and institutions internalized and followed such norms, justice in health could be achieved. -/- In this commentary, I show (...) that Ruger fundamentally misdiagnoses the problem of social cooperation and health justice. Because of the faulty diagnosis, her own proposal is at best unworkable, at worst utopian. (shrink)

The American Journal of Bioethics, Volume 11, Issue 7, Page 47-49, July 2011.

Bioethics, Volume 36, Issue 4, Page 411-422, May 2022.

BackgroundThe rise of Big Data-driven health research challenges the assumed contribution of medical research to the public good, raising questions about whether the status of such research as a common good should be taken for granted, and how public trust can be preserved. Scandals arising out of sharing data during medical research have pointed out that going beyond the requirements of law may be necessary for sustaining trust in data-intensive health research. We propose building upon the use of a social (...) licence for achieving such ethical governance.Main textWe performed a narrative review of the social licence as presented in the biomedical literature. We used a systematic search and selection process, followed by a critical conceptual analysis. The systematic search resulted in nine publications. Our conceptual analysis aims to clarify how societal permission can be granted to health research projects which rely upon the reuse and/or linkage of health data. These activities may be morally demanding. For these types of activities, a moral legitimation, beyond the limits of law, may need to be sought in order to preserve trust. Our analysis indicates that a social licence encourages us to recognise a broad range of stakeholder interests and perspectives in data-intensive health research. This is especially true for patients contributing data. Incorporating such a practice paves the way towards an ethical governance, based upon trust. Public engagement that involves patients from the start is called for to strengthen this social licence.ConclusionsThere are several merits to using the concept of social licence as a guideline for ethical governance. Firstly, it fits the novel scale of data-related risks; secondly, it focuses attention on trustworthiness; and finally, it offers co-creation as a way forward. Greater trust can be achieved in the governance of data-intensive health research by highlighting strategic dialogue with both patients contributing the data, and the public in general. This should ultimately contribute to a more ethical practice of governance. (shrink)

Scholarship focusing on how international research can contribute to justice in global health has primarily explored requirements for the conduct of clinical trials. Yet health systems research in low- and middle-income countries has increasingly been identified as vital to the reduction of health disparities between and within countries. This paper expands an existing ethical framework based on the health capability paradigm – research for health justice – to externally-funded health systems research in LMICs. It argues that a specific form of (...) health systems research in LMICs is required if the enterprise is to advance global health equity. “Research for health justice” requirements for priority setting, research capacity strengthening, and post-study benefits in health systems research are derived in light of the field's distinctive characteristics. Specific obligations are established for external research actors, including governments, funders, sponsors, and investigators. How these framework requirements differ from those for international clinical research is discussed. (shrink)

How international research might contribute to justice in global health has not been substantively addressed by bioethics. This article describes how the provision of ancillary care can link international clinical research to the reduction of global health disparities. It identifies the ancillary care obligations supported by a theory of global justice, showing that Jennifer Ruger’s health capability paradigm requires the delivery of ancillary care to trial participants for a limited subset of conditions that cause severe morbidity and mortality. Empirical research (...) on the Shoklo Malaria Research Unit’s (SMRU) vivax malaria treatment trial was then undertaken to demonstrate whether and how these obligations might be upheld in a resource-poor setting. Our findings show that fulfilment of the ancillary care obligations is feasible where there is commitment from chief investigators and funders and is strongly facilitated by SMRU’s dual role as a research unit and medical non-governmental organization. (shrink)

While there is a growing body of work on moral issues and global governance in the fields of global justice and international relations, little work has connected principles of global health justice with those of global health governance for a theory of global health. Such a theory would enable analysis and evaluation of the current global health system and would ethically and empirically ground proposals for reforming it to more closely align with moral values. Global health governance has been framed (...) as an issue of national security, human security, human rights, and global public goods. The global health governance literature is essentially untethered to a theorized framework to illuminate or evaluate governance. This article ties global health justice and ethics to principles for governing the global health realm, developing a theoretical framework for global and domestic institutions and actors. (shrink)

This article explores how health governance has evolved into an enormously complicated—and inequitable and exclusionary—system of privatized, fragmented bureaucracy, and argues for addressing these deficiencies and promoting health justice by radically deepening democratic participation to rebalance decision-making power. It presents a framework for promoting four primary outcomes from health governance: universality, equity, democratic control, and accountability, which together define health justice through deep democracy. It highlights five mechanisms that hold potential to bring this empowered participatory mode of governance into health (...) policy: participatory needs assessments, participatory human rights budgeting, participatory monitoring, public health care advocates, and citizen juries. (shrink)

BackgroundIn June 2019, the Australian state of Victoria joined the growing number of jurisdictions around the world to have legalised some form of voluntary assisted dying. A discourse of safety was prominent during the implementation of the Victorian legislation.Main textIn this paper, we analyse the ethical relationship between legislative “safeguards” and equal access. Drawing primarily on Ruger’s model of equal access to health care services, we analyse the Victorian approach to voluntary assisted dying in terms of four dimensions: horizontal equity, (...) patient agency, high quality care, and supportive social norms. We argue that some provisions framed as safeguards in the legislation create significant barriers to equal access for eligible patients.ConclusionsWhile safety is undoubtedly ethically important, we caution against an overemphasis on safeguarding in voluntary assisted dying legislation given the implications for equal access. (shrink)

The American Journal of Bioethics, Volume 11, Issue 7, Page 51-53, July 2011.

Global health research partnerships are increasingly taking the form of consortia of institutions from high-income countries and low- and middle-income countries that undertake programs of research. These partnerships differ from collaborations that carry out single projects in the multiplicity of their goals, scope of their activities, and nature of their management. Although such consortia typically aim to reduce health disparities between and within countries, what is required for them to do so has not been clearly defined. This article takes a (...) conceptual approach to explore how the governance of transnational global health research consortia should be structured to advance health equity. To do so, it applies an account called shared health governance to derive procedural and substantive guidance. A checklist based on this guidance is proposed to assist research consortia determine where their governance practices strongly promote equity and where they may fall short. (shrink)

Bioethics is not a spectator sport. Health is an applied field that requires that insight be connected to the real world. Few have done more thoughtful writing on the need to advance a moral basis...

The American Journal of Bioethics, Volume 12, Issue 7, Page 65, July 2012.

The American Journal of Bioethics, Volume 11, Issue 7, Page 53-55, July 2011.

The American Journal of Bioethics, Volume 11, Issue 7, Page 55-57, July 2011.

The American Journal of Bioethics, Volume 12, Issue 7, Page 63-64, July 2012.