Bioethics最新文献

{"title":"Deliberative Groups and Health Measurement","authors":"Daniel M. Hausman","doi":"10.1111/bioe.70150","DOIUrl":"10.1111/bioe.70150","url":null,"abstract":"<div>\u0000 \u0000 <p>In this essay, I consider what role deliberative groups ought to play in the measurement of health. The introduction considers what deliberative groups can do, what are their costs and risks, when they are likely to be most useful, and how they are best constructed. Section 2 then discusses the need to measure health and the methods that are employed to do so. Section 3 presents the case for relying on deliberative groups. Section 4 criticizes that case, but it allows for a role for deliberative groups in determining the implicit principles governing the assignment of values to health states.</p>\u0000 </div>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"40 9","pages":"993-999"},"PeriodicalIF":2.3,"publicationDate":"2026-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148414023","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Why Engage Communities in Biomedical Research?","authors":"Robert Steel","doi":"10.1111/bioe.70155","DOIUrl":"10.1111/bioe.70155","url":null,"abstract":"<p>While community engagement in biomedical research is widely lauded, and many reasons to engage communities have been adduced, it is unclear whether all these reasons are equally important, and, if not, which are most important. Here, I argue that, outside of rare circumstances, community engagement should not be understood as seeking permission from communities. Rather, it should be understood as adding value to research. I also argue that while community engagement may add value in a variety of ways—including making research more respectful, more empowering, and more likely to successfully translate into health gains—it is the health gains that should be its primary focus.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"40 9","pages":"962-975"},"PeriodicalIF":2.3,"publicationDate":"2026-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.70155","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148474533","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Scaleup Costs, Size, and Statistics Challenge to Democratic Deliberation on Health Policy","authors":"Nir Eyal","doi":"10.1111/bioe.70191","DOIUrl":"https://doi.org/10.1111/bioe.70191","url":null,"abstract":"<p>Current fashion supports aligning health policy with the recommendations of deliberative forums, or mini-publics. These forums' participants are selected randomly from the general public (sometimes with overrepresentation of direct stakeholders or of underrepresented sectors). After being informed and exchanging public reasons with fellow participants under discursive rules that engage all as equals, participants vote on and sometimes rank policy recommendations. According to supporters, a deliberative democratic process that holds such forums and translates their recommendations to policy legitimizes resulting policy. That's thanks to this process's tendencies to strengthen democratic consent, to uncover which policy option is objectively best, to align policy with lay normative outlooks, and to educate the public. I argue that one tri-partite feature of nearly all instances of democratic deliberation on regional, national, and global health policy under current best practice, which I call the “Scaleup costs, Size, and Statistics” (“3S”) challenge, largely blocks these alleged welcome tendencies. In particular, barring radical changes, true democratic deliberation is expensive to scale, keeping feasible mini-publics small and irregular. That makes concluding from mini-public recommendations about the population's hypothetical consent, values, and will statistically unreliable. It also caps low mini-publics' contribution to public education. In these ways and in others, the long list of alleged welcome tendencies of proper democratic deliberation on health policy, and the related contribution to political legitimacy, is largely a fiction. Public deliberation does have modest true merit, for example, providing relevant qualitative input about the lay public's occasional factual insights and many endemic errors; and making the public feel “listened to,” whether or not it is. But those merits are modest, contingent, and most accentuated under different institutions than envisaged in deliberative democratic literature. Certainly there is room for democratic deliberation, potentially of new breeds, but only as part of the mosaic of health policy design, alongside familiar methods like general elections, public surveys, representative government, and expert decisionmaking. The main question is which method to use when.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"40 9","pages":"1025-1038"},"PeriodicalIF":2.3,"publicationDate":"2026-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.70191","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149177388","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"CRISPR, APGAR and Cancer Screening: Public Engagement, Controversy and Misaligned Values","authors":"Stephen John","doi":"10.1111/bioe.70158","DOIUrl":"10.1111/bioe.70158","url":null,"abstract":"<p>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.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"40 9","pages":"1009-1016"},"PeriodicalIF":2.3,"publicationDate":"2026-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.70158","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148563811","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Process Is Not the Point: Moral Uncertainty and Substantive Justice in Health Care Priority Setting","authors":"Leah Pierson","doi":"10.1111/bioe.70157","DOIUrl":"10.1111/bioe.70157","url":null,"abstract":"<p>Health actors must ration care due to resource constraints. But even when decision makers know the relevant empirical facts about an allocation decision—including how many patients will benefit from a service, which patients will benefit, how much each patient will benefit, and so on—these facts may not provide a clear answer about how to make allocation decisions. This is because competing moral principles recommend different courses of action: for instance, maximizing health benefits may involve deprioritizing more disadvantaged groups. Facing this moral uncertainty, many ethicists and policymakers have embraced using “fair processes” that emphasize procedural justice over substantively just outcomes. This paper challenges the proceduralist consensus on two grounds. First, I argue that designing fair processes generates as much moral uncertainty as making allocation decisions directly, while also failing to address the substantive allocation question that must ultimately be answered. Second, both theory and empirical evidence suggest that fair processes favor less cost-effective interventions, risk compounding health inequities, and divert resources that might otherwise be used for health care. As an alternative approach, I argue that health actors should pursue substantive justice through Maximizing Expected Choiceworthiness (MEC)—a decision framework that aims to choose options based on their expected value across different possible moral principles, weighted by the confidence decision makers have in each principle. I demonstrate that MEC can yield practical, intuitive answers to some resource allocation questions, while providing a helpful framework for approaching others. I conclude that health actors can and should pursue substantive—rather than procedural—justice in setting health priorities.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"40 9","pages":"1050-1064"},"PeriodicalIF":2.3,"publicationDate":"2026-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.70157","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149026871","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Critical Perspectives on Democratic Deliberation in Health and Science Policy","authors":"Leah Pierson,&nbsp;Mark Sheehan,&nbsp;Nir Eyal","doi":"10.1111/bioe.70192","DOIUrl":"https://doi.org/10.1111/bioe.70192","url":null,"abstract":"&lt;p&gt;Many bioethicists support engaging the public in health and science policymaking.&lt;sup&gt;1&lt;/sup&gt; The deliberative processes they favor generally aim to shift power from professional experts to laypeople, thereby enhancing public voice and impact on health sector priorities, research oversight, and public health policy.&lt;/p&gt;&lt;p&gt;In this vein, deliberative forums with members of the public have been held around the world on many topics, including data use and access, gene editing, state funding of healthcare, food taxes and subsidies, drug use, and the legality of abortion [&lt;span&gt;1-6&lt;/span&gt;]. According to the OECD, “It is essential to institutionalize participatory and deliberative processes,” presumably even in countries that have strong democratic foundations, as most OECD countries do [&lt;span&gt;7, 8&lt;/span&gt;]. Some major research funders now consider members of the lay public's evaluation of research proposals in deciding which proposals to fund [&lt;span&gt;9&lt;/span&gt;].&lt;/p&gt;&lt;p&gt;Deliberative processes are regularly said to enhance public trust, civic education, and community spirit. They are also claimed to enable the discovery of the right answers to policy questions or to promote legitimacy, respect, fairness, and equality of outcomes [&lt;span&gt;10&lt;/span&gt;]. Perhaps because these rationales are appealing, and high-quality data on the downstream impacts of such policies are scarce, there has been little pushback within the bioethics community against their widespread adoption. Yet complexities crop up.&lt;/p&gt;&lt;p&gt;Contributions to this issue raise both conceptual and empirical challenges to the widespread adoption of deliberative democratic approaches to health and science policymaking. As we now elaborate, they point out inconsistencies in the bioethics literature concerning the justifications of public engagement and what the public ought to deliberate about, many deliberative forums' statistical unreliability and non-representativeness, their high costs, and, finally, the availability of superior alternatives.&lt;/p&gt;&lt;p&gt;Advocates of a given deliberative practice seldom explicitly state its function or rationale. Candidate justifications have been grouped into two broad categories: &lt;i&gt;ones based on promoting the flow of information from the public to policymakers&lt;/i&gt; and &lt;i&gt;ones based&lt;/i&gt; on &lt;i&gt;promoting the flow of information from policymakers to the public&lt;/i&gt; [&lt;span&gt;11&lt;/span&gt;]. Within the first category, deliberative practices may aim to elicit values or facts; within the second category, to disseminate information or improve the public's understanding of relevant processes. These are all commendable goals, but they are very &lt;i&gt;different&lt;/i&gt; goals, and point toward distinct—and potentially conflicting—forms of public engagement. Further justifications that do not fall into these two categories only exacerbate the challenge.&lt;/p&gt;&lt;p&gt;Three contributions to the special issue ask what public engagement is for. Daniel Hutton Ferris and Johannes Kniess consider three possible ra","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"40 9","pages":"951-953"},"PeriodicalIF":2.3,"publicationDate":"2026-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.70192","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149176974","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Response to \"Beneficial Bloodsucking\": The Moral Peril of Instrumentalizing Disease.","authors":"Richard Jordan","doi":"10.1111/bioe.70197","DOIUrl":"https://doi.org/10.1111/bioe.70197","url":null,"abstract":"","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":" ","pages":""},"PeriodicalIF":2.3,"publicationDate":"2026-10-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149167544","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Codifying the Short Code.","authors":"C Bree Johnston, Harsukhjit Deol, Janice Gatzke","doi":"10.1111/bioe.70201","DOIUrl":"https://doi.org/10.1111/bioe.70201","url":null,"abstract":"","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":" ","pages":""},"PeriodicalIF":2.3,"publicationDate":"2026-10-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149149810","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Losing Control: Why Absence of Controlling Influences Should be Replaced by Absence of Alienating Influences as a Criterion for Autonomous Action in Bioethics.","authors":"Pepijn Al","doi":"10.1111/bioe.70200","DOIUrl":"https://doi.org/10.1111/bioe.70200","url":null,"abstract":"<p><p>According to Faden and Beauchamp's influential model, an action is autonomous when it is done intentionally with understanding and in the absence of controlling influences. Recent debates concerning nudges have shown, however, that this last condition gives limited ethical guidance for assessing the ethical permissibility of manipulative influences-that is, influences that are neither fully controlling nor fully noncontrolling. While multiple authors have developed frameworks to determine the ethical permissibility of nudges, the implications for the concept of autonomous action have not been addressed yet. This is problematic, as the concept of autonomous action informs the practice of informed consent and the concept of voluntariness. In this paper, I defend a revised conceptualization of autonomous action in light of these developments. I will first consider and reject two proposed interpretations of \"noncontrol\": easy resistibility and the absence of illegitimate control. Building on the work of Christman and Blumenthal-Barby, I then argue that \"the absence of controlling influences\" should be replaced by \"the absence of alienating influences\". On this view, influences are compatible with respecting an autonomous choice to the extent that persons would not feel alienated from their choice were they to reflect on that decision in light of those influences. This condition, I argue, can better capture the nature of autonomy and provide better guidance as to which influences are compatible with respecting a person's autonomy. I end by responding to the objection that non-alienation is too demanding and spell out some practical and conceptual implications of this revised concept.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":" ","pages":""},"PeriodicalIF":2.3,"publicationDate":"2026-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149129250","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Tiredness and the Capacity to Decide: The Example of Maternity Care.","authors":"Luke Brunning","doi":"10.1111/bioe.70199","DOIUrl":"https://doi.org/10.1111/bioe.70199","url":null,"abstract":"<p><p>Tiredness is taken seriously in healthcare where clinicians are concerned since good decisions require the ability to think clearly. The impact of patient tiredness is neglected. This is surprising, as there are healthcare contexts, like maternity care, where tiredness is nearly ubiquitous. Empirical research into sleep deprivation suggests that tiredness undermines substantially our abilities to understand and reason about potential choices. Since these abilities are necessary components of having capacity, tired patients may lack capacity in moments when important choices have to be made, for example a late intervention in active labour. I defend this argument. Tiredness can sometimes impair capacity and so justifies testing for capacity in some cases. Taking tiredness seriously and assessing it in practice is not paternalistic. Indeed, I argue that recognising the impact of tiredness, while failing to act on that fact, constitutes 'dependency denial' which harms women in maternity care.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":" ","pages":""},"PeriodicalIF":2.3,"publicationDate":"2026-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149118883","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}