{"title":"Patient organisations, venture philanthropy and the ethics of pursuing cures over care.","authors":"Matthew S McCoy","doi":"10.1136/jme-2025-110875","DOIUrl":"https://doi.org/10.1136/jme-2025-110875","url":null,"abstract":"<p><p>Patient organisations aim to advance the interests of patient populations living with various diseases, disabilities and health conditions. However, because the members of a given patient population often have varied or even conflicting interests, the way in which a patient organisation pursues its mission can be contentious, as it typically involves prioritising the interests of some patients over others. There is some evidence to suggest that in recent years, patient organisations have increasingly directed resources toward supporting research, a trend that may be spurred by the rise of venture philanthropy-an emerging model in which patient organisations make high-risk, high-reward research investments with the goal of advancing treatments and cures. While venture philanthropy has garnered significant support, it has also faced criticism from patients currently living with serious illnesses, who argue that research investments benefit future patients at the expense of services for current patients. Against the backdrop of these developments, this paper investigates the ethics of patient organisations pursuing cures over care. I begin by identifying a key assumption shared by proponents and critics of venture philanthropy, which suggests that patient organisations can permissibly choose whether they aim to benefit current or future patients. Yet I go on to argue that even if patient organisations may permissibly prioritise future patients, their promissory, stewardship and representative obligations may, under some circumstances, limit their discretion to invest in research. Under other circumstances, however, these same obligations may give patient organisations reasons to prioritise research.</p>","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-09-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145075242","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":"Digital twin ethics, physiological constraints and real-time feedback.","authors":"Sachula Wang","doi":"10.1136/jme-2025-111177","DOIUrl":"https://doi.org/10.1136/jme-2025-111177","url":null,"abstract":"","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145069552","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}
Jesse Weidema, Martine C de Vries, Nienke de Graeff
{"title":"From image to infrastructure: reframing identity production in digital twins.","authors":"Jesse Weidema, Martine C de Vries, Nienke de Graeff","doi":"10.1136/jme-2025-111184","DOIUrl":"https://doi.org/10.1136/jme-2025-111184","url":null,"abstract":"","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145069499","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":"<i>Wuwei</i>: a Taoist perspective on the ethics of Neuro-AI.","authors":"Miranda Qianyu Wang","doi":"10.1136/jme-2025-111067","DOIUrl":"https://doi.org/10.1136/jme-2025-111067","url":null,"abstract":"","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145033543","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":"Rethinking epistemic injustice in psychiatric digital phenotyping from the perspective of ignorance.","authors":"Junjie Yang","doi":"10.1136/jme-2025-110858","DOIUrl":"https://doi.org/10.1136/jme-2025-110858","url":null,"abstract":"<p><p>Digital phenotyping is a novel approach to assessing individual health conditions by collecting and analysing data generated through interactions with digital devices. Although digital phenotyping is regarded as a promising tool for transforming psychiatric clinical practice, its potential to exacerbate epistemic injustice remains a central ethical concern. However, epistemic injustice in psychiatric digital phenotyping should be understood as rooted in specific forms of ignorance, which are not necessarily negative obstacles. On the contrary, phenomenological, objective and structural ignorance in psychiatric digital phenotyping can be leveraged to enhance patient epistemic empowerment and thereby help to overcome epistemic injustice.</p>","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145033553","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}
Jonathan Pugh, Dominic Wilkinson, Julian Savulescu
{"title":"Self-censorship: should scientific journals decline to publish self-experimentation?","authors":"Jonathan Pugh, Dominic Wilkinson, Julian Savulescu","doi":"10.1136/jme-2025-110730","DOIUrl":"https://doi.org/10.1136/jme-2025-110730","url":null,"abstract":"<p><p>A virologist recently made headlines after successfully using an experimental form of oncolytic virotherapy to treat her own recurrent breast cancer. This case has come at a time when regulators are increasingly having to grapple with the proliferation of self-experimentation outside of accredited research institutions. There is, therefore, a pressing need to outline the key ethical dimensions of self-experimentation and to develop ethical guidance for journals that may be faced with decisions about whether to publish research involving self-experimentation. In this paper, we aim to provide such guidance. We argue that while self-experimentation is not always ethically problematic, neither is there an in-principle moral reason for exempting it from ethical evaluation. After summarising the details of the recent case report of self-experimentation and briefly placing it in historical context, we suggest that it is possible to navigate the ethical issues raised in cases of self-experimentation by returning to fundamental values in research ethics, focusing on the implications of self-experimentation for respect for autonomy, reasonable risk, and preventing harm to others. We apply these principles to the case report and explain why the publication of this report can be morally justified. We ultimately advocate for a case-by-case assessment of studies involving self-experimentation submitted for publication by ethical review boards and journal editors, and we propose a decision-making algorithm to help guide such decisions.</p>","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145033535","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":"Relational accountability in AI-driven pharmaceutical practices: an ethics approach to bias, inequity and structural harm.","authors":"Irfan Biswas","doi":"10.1136/jme-2025-110913","DOIUrl":"https://doi.org/10.1136/jme-2025-110913","url":null,"abstract":"<p><p>The integration of artificial intelligence (AI) into pharmaceutical practices raises critical ethical concerns, including algorithmic bias, data commodification and global health inequities. While existing AI ethics frameworks emphasise transparency and fairness, they often overlook structural vulnerabilities tied to race, gender and socioeconomic status. This paper introduces relational accountability-a feminist ethics framework-to critique AI-driven pharmaceutical practices, arguing that corporate reliance on biased algorithms exacerbates inequalities by design. Through case studies of Pfizer-IBM Watson's immuno-oncology collaboration and Google DeepMind's National Health Service partnership, we demonstrate how AI entrenches disparities in drug pricing, access and development. We propose a causal pathway linking biased training data to inequitable health outcomes, supported by empirical evidence of AI-driven price discrimination and exclusionary clinical trial recruitment algorithms. Policy solutions, including algorithmic audits and equity-centred data governance, are advanced to realign AI with the ethical imperative. This work bridges feminist bioethics and AI governance, offering a novel lens to address structural harm in healthcare innovation.</p>","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-09-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145033548","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":"Weighty matters: Ozempic, autonomy and the ethics of health reform.","authors":"Joona Räsänen, Johanna Ahola-Launonen","doi":"10.1136/jme-2025-111117","DOIUrl":"https://doi.org/10.1136/jme-2025-111117","url":null,"abstract":"<p><p>Ryan and Savulescu recently offered an ethical analysis of the use of semaglutide-based weight-loss drugs such as Ozempic. In this response, we continue the discussion and argue that their framework insufficiently addresses structural inequalities and the broader political context of obesity treatment. Positioning pharmaceutical drugs as a solution to socially produced health problems narrows moral decision-making, causing structural approaches to appear less urgent and less important. We criticise the individualistic conception of autonomy commonly invoked to justify pharmaceutical choice, arguing that a proper definition of autonomy requires attention to social contexts-stigma, discrimination and economic inequality-that shape treatment decisions. We call for a broader ethical framework-one that interrogates structural injustices and reimagines health interventions beyond individual treatment-asking: is the problem our bodies or unregulated markets and environments that produce ill health in them?</p>","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-09-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145023420","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":"Designing inclusive digital twins: ethical and practical considerations for trans healthcare.","authors":"Alberto Boretti","doi":"10.1136/jme-2025-111120","DOIUrl":"10.1136/jme-2025-111120","url":null,"abstract":"","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-09-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144957345","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}
Vilius Dranseika, Piotr Bystranowski, Tomasz Żuradzki
{"title":"Personal memory and distant reading can complement each other: a reply to Gillon.","authors":"Vilius Dranseika, Piotr Bystranowski, Tomasz Żuradzki","doi":"10.1136/jme-2025-111310","DOIUrl":"https://doi.org/10.1136/jme-2025-111310","url":null,"abstract":"<p><p>We respond to Gillon's critique of our data-driven analysis of the history of <i>Journal of Medical Ethics</i> (<i>JME</i>), in which we used a topic model to trace intellectual trends in the journal's first 50 years. Gillon, drawing on his personal memories as <i>JME</i>'s second (and longest serving) editor, challenges several of our findings, particularly those concerning the prominence and classification of topics such as <i>Ethics education</i> In this reply, we clarify misunderstandings that led to part of his criticisms of our method. At the same time, we also briefly discuss some nuances of topic modelling, in particular, its reliance on simplified representations of text, sensitivity to modeling choices and topic interpretations. Rather than viewing computational models and editorial memory as competing sources of insight, we propose that they are complementary: each illuminates different dimensions of the journal's evolution. Gillon's engagement with our work ultimately highlights the importance of methodological transparency and the value of combining digital humanities tools with lived experience in the historiography of academic disciplines.</p>","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-09-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145000747","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}