ABSTRACT There are many calls for public engagement in decision‐making around controversial technologies, but far fewer calls for public engagement in deliberation around less controversial interventions. We think the public should be involved in discussing CRISPR, but not in discussing APGAR. Drawing on the case of debates over cancer screening, this paper argues we have things the wrong way around. Given the complex entanglement of fact and value, it is very hard to have high‐quality public deliberation over novel technologies. By contrast, it is easier to have deliberation over more mundane technologies. There is, then, good reason to think we should engage in more public deliberation over mundane technologies. The results of this deliberation can then be used in more high‐profile cases.

The claim that science is value-laden raises concerns that reliance on science, both by individuals or policymakers, might be incompatible with respect for autonomy or democratic principles. This article explores one response to this problem, that, when appealing to non-epistemic values in scientific contexts, scientists ought to use the “democratic” values which their audiences would agree upon. Ultimately, it argues that this “Democratic Alignment Demand” should be rejected. Section 1 articulates why the “Democratic Alignment Demand” may seem appealing. Section 2 suggests a problem with the demand: that it seems implausible in the analogous case of artistic production. Section 3 draws on this analogy to argue that the demand is far weaker than it seems. Section 4 adds a further argument against the demand: that it confuses a sufficient condition for legitimacy with a necessary condition.

There are many puzzles about whether and how to communicate risk information, particularly in public health and medical settings. This paper does three things. First, it suggests a model for whether and how to communicate risk which balances concerns about autonomy and concerns about beneficence. Second, it argues that in the case of risk communication, there are also difficult questions, stemming from the reference class problem, about what risks to communicate. Third, it uses the Justified Misalignments framework developed in the first part of the paper to address these puzzles.

BackgroundRecent advances mean that innovations are emerging that enable better stratification of individuals based on their risk of cancer so that screening or diagnostic investigations can be targeted to those at greatest need. We explored the views of the public, from a societal perspective, of using such risk-based innovations to identify people's cancer risk and allocating healthcare accordingly.MethodsWe conducted three community juries, each with 7-9 participants. Participants were informed about the topic and potential novel risk-based innovations through a series of presentations from experts and discussions. Polygenic risk scores, geodemographic segmentation, continuous monitoring of biomarkers, minimally invasive tests, artificial intelligence analysis of medical records, and wearable devices were used as examples. The participants then deliberated over the research questions before reporting their verdicts on the acceptability of these novel data-based approaches in principle. Transcripts were analysed using codebook thematic analysis.ResultsAll juries found that the proposed risk-based approaches to cancer healthcare were, in general, acceptable. Primarily this was because the approaches would enable use of information in a positive and constructive way. However, there were a number of qualifiers or caveats. In particular, participants highlighted the necessity of using accurate and robust data with a well-evidenced association with cancer risk. They also expressed concerns about unintended consequences such as for insurance, scams or erosion of personal liberty, and the burden to participate in data collection across society. All agreed that opting-out must be straightforward.ConclusionsInformed members of the public supported the concept of using innovations to estimate cancer risk and inform healthcare. Their priorities for accuracy, data security, participation burden, and personal liberty and choice tended to overlap with those of developers and policymakers. Work to ready these innovations for implementation should continue, with the public's priorities accounted for in their development and dissemination in order to address any unintended consequences upfront.

There are many debates over who should pay for medical care and how to ration scarce resources. These debates are an important point where philosophy of medicine meets the political philosophy of health. However, a notable feature of actual public policy is that it often seems to involve a strong preference for funding medical treatments over funding the prevention of ill-health. This preference makes little sense from the perspective of most accounts of the political philosophy of health. This chapter outlines the problem and investigates two possible ways to justify the preference for treatment over prevention: as reflecting a defensible version of the identified/statistical victims preference and as grounded on an “ethics of care.” The chapter then explores the implications of these arguments for some more familiar debates around “paying for medicine,” including the relevance of the “rule of rescue” and the distinction between treatments and enhancements.

Background Population-based cancer screening programmes are shifting away from age and/or sex-based screening criteria towards a risk-stratified approach. Any such changes must be acceptable to the public and communicated effectively. We aimed to explore the social and ethical considerations of implementing risk stratification at three different stages of the bowel cancer screening programme and to understand public requirements for communication. Methods We conducted two pairs of community juries, addressing risk stratification for screening eligibility or thresholds for referral to colonoscopy and screening interval. Using screening test results (where applicable), and lifestyle and genetic risk scores were suggested as potential stratification strategies. After being informed about the topic through a series of presentations and discussions including screening principles, ethical considerations and how risk stratification could be incorporated, participants deliberated over the research questions. They then reported their final verdicts on the acceptability of risk-stratified screening and what information should be shared about their preferred screening strategy. Transcripts were analysed using codebook thematic analysis. Results Risk stratification of bowel cancer screening was acceptable to the informed public. Using data within the current system (age, sex and screening results) was considered an obvious next step and collecting additional data for lifestyle and/or genetic risk assessment was also preferable to age-based screening. Participants acknowledged benefits to individuals and health services, as well as articulating concerns for people with low cancer risk, potential public misconceptions and additional complexity for the system. The need for clear and effective communication about changes to the screening programme and individual risk feedback was highlighted, including making a distinction between information that should be shared with everyone by default and additional details that are available elsewhere. Conclusions From the perspective of public acceptability, risk stratification using current data could be implemented immediately, ahead of more complex strategies. Collecting additional data for lifestyle and/or genetic risk assessment was also considered acceptable but the practicalities of collecting such data and how the programme would be communicated require careful consideration.

Cancer screening programmes aim to save lives and reduce cancer burden through prevention or early detection of specific cancers. Risk stratification, where one or more elements of a screening programme are systematically tailored based on multiple individual-level risk factors, could improve the balance of screening benefits and harms and programme efficiency. In this article, we explore the resulting ethical issues and how they impact risk-stratified screening policymaking using Beauchamp and Childress’s principles of medical ethics. First, in line with universal screening programme principles, we acknowledge that risk-stratified screening should be introduced only when the expected total benefits outweigh the harms, and where it has a favourable overall impact compared to alternative options. We then discuss how these are difficult to both value and quantify, and that risk models typically perform differently in sub-populations. Second, we consider whether screening is an individual right and whether it is fair to offer more or less intensive screening to some and not others based on personal characteristics. Third, we discuss the need to maintain respect for autonomy, including ensuring informed consent and considering the screening implications for those who cannot or choose not to participate in the risk assessment. In summary, from an ethical perspective, focusing on population-level effectiveness alone is insufficient when planning risk-stratified screening programmes and the range of ethical principles must be considered.

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Screening for asymptomatic disease is a routine aspect of contemporary public health practice. However, it is also controversial, because it leads to overdiagnosis and overtreatment, with many arguing that programmes are “ineffective,” i.e., the “costs” outweigh the “benefits.” This paper explores a more fundamental objection to screening programmes: that, even if they are effective, they are ethically impermissible because they breach the principle of non-maleficence. In so doing, it suggests a new approach to the ethics of risk, justifying a concern with how policies affect individuals’ absolute ex-ante prospects. Part 1 sets up the tension between screening and non-maleficence. Part 2 introduces and motivates a novel interpretation of the non-maleficence principle, “ex-ante Do No Harm,” which resolves this tension. Part 3 defends and clarifies this principle by discussing its relationship to the ex-ante Pareto principle. Part 4 discusses the worry that risk estimates are too “subjective.”

ABSTRACTIn this article, we aim to map out the complexities which characterise debates about the ethics of vaccine distribution, particularly those surrounding the distribution of the COVID‐19 vaccine. In doing so, we distinguish three general principles which might be used to distribute goods and two ambiguities in how one might wish to spell them out. We then argue that we can understand actual debates around the COVID‐19 vaccine – including those over prioritising vaccinating the most vulnerable – as reflecting disagreements over these principles. Finally, we shift our attention away from traditional discussions of distributive justice, highlighting the importance of concerns about risk imposition, special duties, and social roles in explaining debates over the COVID‐19 vaccine. We conclude that the normative complexity this article highlights deepens the need for decision‐making bodies to be sensitive to public input.

This chapter investigates some of the challenges of reconciling the population-level perspective of epidemiology and public health policy with the perspective of affected individuals. Sections "Introduction" and "Motivating the individual perspective" use two case studies of paradigmatic public health problems, screening for cancer and mass vaccination, to introduce and outline some of the ethical tensions which emerge in reconciling individual- and population-level perspectives. Section "Prevention paradoxes" discusses some of the conceptual and epistemological challenges inherent in three of the concepts which frame these problems: the notion of a risk factor, the notion of a sub-population, and issues around establishing causal links. Section "The epistemic aspect" sketches some ways of combining the ethical and epistemological issues to create an integrated philosophy of public health.

There are many analogies between medical and judicial practice. This article explores one such analogy, between “medicalization” and “criminalization.” Specifically, drawing on an analogy between a judge’s speech act of delivering a verdict and a physician’s speech act of giving a diagnosis, it suggests a novel account of the phenomenon of “overdiagnosis.” Using this approach, we can make some headway in understanding debates over the early detection of cancer. The final section outlines the relationship between this approach and familiar debates in philosophy of medicine on the nature of disease and in philosophy of science on the “value-free ideal.”

Public health policy often involves a trade-off between promoting population health and protecting the interests of identifiable individuals. This paper analyses this trade-off as it arises in the context of decisions about the vaccination of children against Covid-19, where vaccination may be in the interests of society as a whole, as a means to stopping transmission, but not in the interests of individual children. The paper argues that the UK's Joint Committee on Vaccination and Immunisation resolved this tension by appeal to a version of a non-maleficence principle. It argues that, while this principle can be a useful guide to some public health policy decision-making, it is inappropriate in the case of vaccination.

This paper explores some of the ethical issues around offering COVID-19 vaccines to children. My main conclusion is rather paradoxical: the younger we go, the stronger the grounds for justified parental hesitancy and, as such, the stronger the arguments for enforcing vaccination. I suggest that this is not the reductio ad absurdum it appears, but does point to difficult questions about the nature of parental authority in vaccination cases. The first section sketches the disagreement over vaccinating teenagers, arguing that the UK policy was permissible. The second section outlines a problem for this policy, that it faces justified vaccine hesitancy. The third section discusses three strategies for responding to this problem, arguing that there may be no simple way of overcoming parents’ reasons to resist vaccinations.

Abstract Introduction Using risk stratification to determine eligibility for cancer screening is likely to improve the efficiency of screening programmes by targeting resources towards those most likely to benefit. We aimed to explore the implications of this approach from a societal perspective by understanding public views on the most acceptable stratification strategies. Methods We conducted three online community juries with 9 or 10 participants in each. Participants were purposefully sampled by age (40–79 years), sex, ethnicity, social grade and English region. On the first day, participants were informed of the potential benefits and harms of cancer screening and the implications of different ways of introducing stratification using scenarios based on phenotypic and genetic risk scores. On the second day, participants deliberated to reach a verdict on the research question, ‘Which approach(es) to inviting people to screening are acceptable, and under what circumstances?’ Deliberations and feedback were recorded and analysed using thematic analysis. Results Across the juries, the principle of risk stratification was generally considered to be an acceptable approach for determining eligibility for screening. Disregarding increasing capacity, the participants considered it to enable efficient resource allocation to high‐risk individuals and could see how it might help to save lives. However, there were concerns regarding fair implementation, particularly how the risk assessment would be performed at scale and how people at low risk would be managed. Some favoured using the most accurate risk prediction model whereas others thought that certain risk factors should be prioritized (particularly factors considered as non‐modifiable and relatively stable, such as genetics and family history). Transparently justifying the programme and public education about cancer risk emerged as important contributors to acceptability. Conclusion Using risk stratification to determine eligibility for cancer screening was acceptable to informed members of the public, particularly if it included risk factors they considered fair and when communicated transparently. Patient or Public Contribution Two patient and public involvement representatives were involved throughout this study. They were not involved in synthesizing the results but contributed to producing study materials, co‐facilitated the community juries and commented on the interpretation of the findings and final report.