Ariane Lewis provided an insightful review of several controversial cases of death by neurologic criteria (“brain death”) in the UK, focusing on Archie Battersbee, a boy whose tragic illness provok...

In “An Overview of Ethical Challenges Raised by Medicolegal Challenges to Death by Neurologic Criteria in the United Kingdom and a Comparison to Management of these Challenges in the USA,” Ariane L...

This World Bank Report offers a new conception of fair decision processes in health financing. It argues that such procedural fairness can contribute to fairer outcomes, strengthen the legitimacy of decision processes, build trust in authorities, and promote the sustainability of reforms on the path to health coverage for all.

The literature on patient public involvement and engagement (PPIE) in health research has grown significantly in the last decade, with a diverse range of definitions and topologies promulgated. This has led to disputes over what the central functions and purpose of PPIE in health research is, and this in turn makes it difficult to assess and evaluate PPIE in practice. This paper argues that the most important function of PPIE is the attempt to make health research more democratic. Bringing this (...) function to the fore and locating PPIE in the wider context of changes in contemporary forms of democratic engagement provides greater conceptual clarity over what PPIE in research should be trying to achieve. Conceptualizing PPIE as a form of democratization has a number of benefits. First, theories of what are appropriate, normatively justifiable and workable criteria for PPIE practices can be developed, and this can provide tools to address the legitimacy and accountability questions that have troubled the PPIE community. Second, this work can be used to form the basis of a research agenda to investigate how PPIE in health research operates, and how it can facilitate and/or improve democratic processes in health research. (shrink)

As the assumptions of perpetual economic and population growth no longer stand, the welfare systems built on such promises are in peril. Policymakers must reallocate the responsibility for providing care between generations. Democratic theories can help establish procedures for finding solutions, particularly in ageing democratic countries. By analysing existing representative and deliberative democratic theories, this paper explores how the interests of future generations could be included in such procedures. A hypothetical social health insurance scheme with the pay-as-you-go financial arrangement is (...) selected as an illustrative case. This paper argues that due to the intrinsic bias towards the current generation, both representative and deliberative democratic health policymaking are limited in making decisions that account for future generations. Instead, their interests could be at best represented by benevolent representatives. (shrink)

The release of genetically engineered organisms into the shared environment raises scientific, ethical, and societal issues. Using some form of democratic deliberation to provide the public with a voice on the policies that govern these technologies is important, but there has not been enough attention to how we should connect public deliberation to the existing regulatory process. Drawing on lessons from previous public deliberative efforts by U.S. federal agencies, we identify several practical issues that will need to be addressed if (...) relevant federal agencies are to undertake public deliberative activities to inform decision‐making about gene editing in the wild. We argue that, while agencies may have institutional capacity to undertake public deliberative activities, there may not be sufficient political support for them to do so. Advocates of public deliberation need to make a stronger case to Congress about why federal agencies should be encouraged and supported to conduct public deliberations. (shrink)

In this paper, we investigate how data about public preferences may be used to inform policy around the use of controversial novel technologies, using public preferences about autonomous vehicles (AVs) as a case study. We first summarize the recent ‘Moral Machine’ study, which generated preference data from millions of people regarding how they think AVs should respond to emergency situations. We argue that while such preferences cannot be used to directly inform policy, they should not be disregarded. We defend an (...) approach that we call ‘Collective Reflective Equilibrium in Practice’ (CREP). In CREP, data on public attitudes function as an input into a deliberative process that looks for coherence between attitudes, behaviours and competing ethical principles. We argue that in cases of reasonable moral disagreement, data on public attitudes should play a much greater role in shaping policies than in areas of ethical consensus. We apply CREP to some of the global preferences about AVs uncovered by the Moral Machines study. We intend this discussion both as a substantive contribution to the debate about the programming of ethical AVs, and as an illustration of how CREP works. We argue that CREP provides a principled way of using some public preferences as an input for policy, while justifiably disregarding others. (shrink)

Vaccine hesitancy is a growing threat to public health. The reasons are complex but linked inextricably to a lack of trust in vaccines, expertise and traditional sources of authority. Efforts to increase immunization uptake in children in many countries that have seen a fall in vaccination rates are two-fold: addressing hesitancy by improving healthcare professional-parent exchange and information provision in the clinic; and, secondly, public health strategies that can override parental concerns and values with coercive measures such as mandatory and (...) presumptive vaccination. It is argued that such conflicting, parallel approaches seriously risk undermining trust that is crucial for sustaining herd immunity. Although public health strategies can be ethically justified in limiting freedoms, a parent-centered approach seldom acknowledges how it is impacted by contemporaneous coercive measures. In addition, the clinical encounter is not well suited to helping parents consider the public dimensions of vaccination, despite these being important for trust formation and informed decision-making. Efforts to address vaccine hesitancy require more consistent engagement of parental and citizen views. Along with evidence-based information, debates need to be informed by ethical support that equips parents and professionals to respond to the private and public dimensions of vaccination in a more even-handed, transparent manner. Efforts to address vaccine hesitancy need to avoid simple reliance on either parental values or coercive public policies. To do this effectively requires increasing citizen engagement on vaccination to help inform a parent-centered approach and legitimize public policy measures. In addition, cultivating a more ethically consistent strategy means moving beyond the current silos of health ethics - clinical and public health ethics. (shrink)

Vaccine refusal harms and risks harming innocent bystanders. People are not entitled to harm innocents or to impose deadly risks on others, so in these cases there is nothing to be said for the right to refuse vaccination. Compulsory vaccination is therefore justified because non-vaccination can rightly be prohibited, just as other kinds of harmful and risky conduct are rightly prohibited. I develop an analogy to random gunfire to illustrate this point. Vaccine refusal, I argue, is morally similar to firing (...) a weapon into the air and endangering innocent bystanders. By re-framing vaccine refusal as harmful and reckless conduct my aim is to shift the focus of the vaccine debate from non-vaccinators’ religious and refusal rights to everyone else’s rights against being infected with contagious illnesses. Religious freedom and rights of informed consent do not entitle non-vaccinators to harm innocent bystanders, and so coercive vaccination requirements are permissible for the sake of the potential victims of the anti-vaccine movement. (shrink)