{"title":"The role of HRECs in regulating medical research: from peer review to regulation.","authors":"Lisa Eckstein, Jenny C Kaldor, Cameron Stewart","doi":"10.1007/s40592-025-00248-z","DOIUrl":"https://doi.org/10.1007/s40592-025-00248-z","url":null,"abstract":"<p><p>In Australia, Human Research Ethics Committees (HRECs) play a ubiquitous role reviewing human subjects research, as do Institutional Review Boards in the US and elsewhere. While HRECs were established as peer review bodies, we argue they should now be characterised a 'devolved regulator' within the broader context of the regulatory state. We evidence HRECs' regulatory role through three examples of current responsibilities. By categorising HRECs as a regulator, we are able to assess their role through a regulatory lens. Drawing on Reeve and Magnusson's 'regulatory scaffolding' approach, we suggest key ways in which the role provided by HRECs could be improved. These include setting clear roles and responsibilities HREC review; ensuring HREC accountability for the substantive aspects of their decision making; and accountability for trial sponsors who seek review of trials under the Clinical Trials Notification Scheme. Deficits in the above must incur a credible expectation of escalation and review.</p>","PeriodicalId":43628,"journal":{"name":"Monash Bioethics Review","volume":" ","pages":""},"PeriodicalIF":1.6,"publicationDate":"2025-05-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144081248","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Contemporary human rights violations in female sterilization care: legal and ethical considerations when coerced patients do consent.","authors":"Liana Woskie, Mindy Jane Roseman","doi":"10.1007/s40592-025-00240-7","DOIUrl":"https://doi.org/10.1007/s40592-025-00240-7","url":null,"abstract":"<p><p>In this piece we examine three forms of coercive or otherwise involuntary care that can occur with patient consent. To do so, we examine: (1) uninformed consent, (2) contingency-based consent and (3) constrained-market consent, amongst female sterilization patients. While there is broad recognition that \"coercion\" in sterilization care can manifest beyond instances of overt force and clarity on what constitutes coercion within clinical care, this has not translated to accountability. The current practice of identifying coercion through discrete civil cases may facilitate a narrow understanding of its contemporary prevalence; one that does not align with definitions of coercion supported by international human rights entities. We use three acute, and widely recognized, examples-hysterectomies in ICE detention facilities, India's sterilization camp deaths and birth control quotas for Uyghur women-as an entry point to highlight less overt contemporary forms of coercive sterilization care, pairing each example with data that explores prevalence at a broader population level. These data suggest less visible forms of coercion may persist relatively unchallenged-raising the ethical case for a functional approach to the measurement of coercion. In turn, we argue the relevant question may not be \"when is coercion ethically justified in public health,\" but rather, why is coercion already the status quo?</p>","PeriodicalId":43628,"journal":{"name":"Monash Bioethics Review","volume":" ","pages":""},"PeriodicalIF":1.6,"publicationDate":"2025-05-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144054285","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Death talk and access gaps: applying a personalist lens to address inequities for children with complex conditions at the end of life.","authors":"Christina M Lamb, Karen Cook","doi":"10.1007/s40592-025-00246-1","DOIUrl":"https://doi.org/10.1007/s40592-025-00246-1","url":null,"abstract":"<p><p>Children with complex care needs lack access to Specialized Pediatric Palliative care in Canada. At the same time, death is increasingly being handled in a mechanized and specialized manner, with hospitals becoming the expected place for death to occur. Although this is true for some children, the meaning of dying and death is obscured for dying children in Canadian healthcare. Specifically, discussions about dying and death, what they are and what they mean to children are relatively absent in Canadian healthcare contexts. This lack of death talk is a problem for children with medically complex conditions and their families since death is a part of living, and palliative care is essential for children who are living and dying with medical complexity. To address the health disparity that these children face concerning access to pediatric palliative care and having honest conversations about death, it is essential to attend to the bioethics and care frameworks undergirding pediatric healthcare to understand how the meaning of living, dying and death is being valued for this population. Subsequently, in this paper, we will explore a personalist bioethics approach to mitigate these end-of-life disparities.</p>","PeriodicalId":43628,"journal":{"name":"Monash Bioethics Review","volume":" ","pages":""},"PeriodicalIF":1.6,"publicationDate":"2025-05-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144040774","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Proper care for the profoundly disabled depends on theology being recognized as queen of medical humanities.","authors":"Charles Camosy","doi":"10.1007/s40592-025-00247-0","DOIUrl":"https://doi.org/10.1007/s40592-025-00247-0","url":null,"abstract":"<p><p>Despite the rise of the medical humanities in general in recent decades, theological bioethics-during a very similar period of time-was marginalized from many central bioethical discussions. This is problematic for a number of reasons. First, because theologians invented the discipline of bioethics and deserve a place at the table. Second, because the marginalization is often ideologically motivated. And third, because the vision of the human person that theologians bring to the table is essential for understanding the moral status of the proundly disabled.</p>","PeriodicalId":43628,"journal":{"name":"Monash Bioethics Review","volume":" ","pages":""},"PeriodicalIF":1.6,"publicationDate":"2025-05-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144014636","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Safura Abdool Karim, Maxwell J Smith, Diego S Silva, Marlyn Faure, Liana Woskie, Deborah Nyirenda, Cai Heath, Vittoria Porta, Jeffery Jones, Sadie Regmi, MacKenzie Isaac, Jonathan Shaffer, Tess Johnson
{"title":"Coercing for public health: reflections on the role of coercion in public health emergencies.","authors":"Safura Abdool Karim, Maxwell J Smith, Diego S Silva, Marlyn Faure, Liana Woskie, Deborah Nyirenda, Cai Heath, Vittoria Porta, Jeffery Jones, Sadie Regmi, MacKenzie Isaac, Jonathan Shaffer, Tess Johnson","doi":"10.1007/s40592-025-00245-2","DOIUrl":"https://doi.org/10.1007/s40592-025-00245-2","url":null,"abstract":"<p><p>The workshop, Coercing for Health: Transdisciplinary Approaches to the Ethics of Coercive Public Health Policies was held at the University of Oxford on July 3rd and 4th, 2024. This paper provides both a summary of the workshop proceedings and reflections and directions for future research on coercive public health measures. The workshop consisted of four key parts: defining coercion; history and legal analysis of coercion; public health ethics perspectives on coercion; experiences of coercive public health measures. According to our reflections, some important questions remaining for further research include: what is the difference between coercion and enforcement? Who gets to define and address coercion? How do structural factors affect health and experiences of coercion? We encourage others to continue to work on this important area, to ensure the ethically acceptable and thoughtful implementation of any future coercive measures in the sphere of public health.</p>","PeriodicalId":43628,"journal":{"name":"Monash Bioethics Review","volume":" ","pages":""},"PeriodicalIF":1.6,"publicationDate":"2025-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144055393","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Joseph K. visits the sick house: how the medical humanities require the medical posthumanities.","authors":"Martin J Fitzgerald, Peter J Katz","doi":"10.1007/s40592-025-00242-5","DOIUrl":"https://doi.org/10.1007/s40592-025-00242-5","url":null,"abstract":"<p><p>This paper challenges the typical function of narrative in the medical humanities to advocate for a medical posthumanities: an approach that destabilizes the centrality of \"the human\" and instead embraces patient narratives that are embodied, fragmented, and provisional. To make this claim, we first challenge the stability of the \"humanity\" described in the \"medical humanities\" and reiterated in the genre that we call \"the medical romance.\" In this genre, illness and suffering destabilize a sense of identity and coherence, which is then restored through introspection and interpretation of the patient narrative. To challenge this genre, we turn to surface reading, a literary studies technique that sees traditional interpretation as too hurriedly foreclosing on meaning. Through a close reading of Franz Kafka's The Trial and Henrik Ibsen's Hedda Gabler, we demonstrate both what surface reading looks like and also how it embraces generic and interpretive instability. Finally, we focus this approach to narrative on physician-assisted suicide (PAS), particularly attending to PAS and disability, to argue that both medical romance and its entailed traditional narrative interpretation overvalue \"the human\" as an agential individual seeking a \"good death.\" This at once affirms the tendency to encourage the allegedly meaningful death of disabled people by PAS, and also excludes from narrative focus the structural and environmental sources of suffering. The medical posthumanities, in its attention to embodiment, networks, environment, and the decentralizing of individual agents, would better make room for patient narratives that value the messiness and interconnectedness of lived experience.</p>","PeriodicalId":43628,"journal":{"name":"Monash Bioethics Review","volume":" ","pages":""},"PeriodicalIF":1.6,"publicationDate":"2025-04-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144033780","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"King Lear in the upper palaeolithic: searching for ethical principles in prehistory.","authors":"Charles Foster","doi":"10.1007/s40592-025-00241-6","DOIUrl":"https://doi.org/10.1007/s40592-025-00241-6","url":null,"abstract":"<p><p>Ethics are concerned with maximising the thriving of individuals and societies. One cannot maximise the thriving of a person unless one has some idea about what sort of creature that person is. Ethics follow ontology. Many answers have been suggested to the question 'What is a human?' and the less fundamental question 'What are the defining attributes of a human'? Many of those answers are theological, and hint that the essence of a human is indefinable; that humans are unknowable, contradictory and mysterious. This article contends that, since behaviourally modern humans have been hunter-gatherers for an overwhelming proportion of their history, we are still foundationally hunter-gatherers, and that accordingly useful insights into our constitution can be gained by examining the quintessential characteristics of Upper Palaeolithic people. Those characteristics are wandering, a relationship with the non-human world, consciousness, story-telling and a consequential ethical sense, a metaphysical instinct, and an operating system based on symbolism and metaphors. Those characteristics (many of which overlap with the conditions of human thriving described by Martha Nussbaum) have ethical corollaries. The article builds on the work of Peter Hacker in contending that it is not only legitimate but necessary to derive ethics from biology and evolutionary history. Humans emerge from this examination, as they emerge from theological speculation and from the work of most creative artists, as unfathomable. The mysteriousness of humans is a reason for according them moral weight. The article suggests that ethicists should take the lead from creative artists, not vice versa.</p>","PeriodicalId":43628,"journal":{"name":"Monash Bioethics Review","volume":" ","pages":""},"PeriodicalIF":1.6,"publicationDate":"2025-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144020401","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Balancing different views in the contexts of voluntary assisted dying, safe access zones around reproductive health clinics, and the proposed Health Legislation Amendment (Conscientious Objection) Bill.","authors":"Fiona Patten","doi":"10.1007/s40592-025-00227-4","DOIUrl":"https://doi.org/10.1007/s40592-025-00227-4","url":null,"abstract":"<p><p>The following text is the de-identified and edited transcript of an invited presentation by Fiona Patten, who was a member of the Victorian Legislative Council between 2014 and 2022, and leader of the Reason Australia Party. Fiona's presentation addressed the topic of 'Balancing different views in the contexts of voluntary assisted dying, Safe Access Zones around reproductive health clinics, and the proposed Health Legislation Amendment (Conscientious Objection) Bill.' Fiona's presentation formed part of the Conference on Accommodating Plural Values in Healthcare and Healthcare Policy, which was held in Melbourne, Australia, on Monday, October 30, 2023. This conference was a key output of the Australian Research Council Discovery Project grant DP190101597, 'Religion, pluralism, and healthcare practice: A philosophical assessment'. Fiona's presentation was introduced by the project's principal investigator and Deputy Director of Monash Bioethics Centre, Professor Justin Oakley.</p>","PeriodicalId":43628,"journal":{"name":"Monash Bioethics Review","volume":" ","pages":""},"PeriodicalIF":1.6,"publicationDate":"2025-04-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143990274","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Kantian political philosophy, coercion, and public health.","authors":"Remco J L van Dijk, Justin S Bernstein","doi":"10.1007/s40592-025-00239-0","DOIUrl":"https://doi.org/10.1007/s40592-025-00239-0","url":null,"abstract":"<p><p>Many public health policies are coercive and therefore, they require moral justification. Kantian political philosophy is an under-explored but appealing approach to public health ethics. According to the Kantian approach, which is centred around freedom as independence, the state has an important role in protecting that freedom. In doing so, the state is justified to use coercion. To illustrate the Kantian approach, we consider its implications in the context of coercive vaccination policy. We show coercive vaccination policies are justified, because the state is needed to provide determinacy, because such policies are needed to guarantee the systematic enjoyment of the right to freedom, and because such policies reduce the risk for dependence on others.</p>","PeriodicalId":43628,"journal":{"name":"Monash Bioethics Review","volume":" ","pages":""},"PeriodicalIF":1.6,"publicationDate":"2025-04-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143803309","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}