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Authors:
Schmidt; H. Pages: 797 - 798 Abstract: The World Health Organization (WHO) is currently in advanced stages of developing a ‘WHO convention, agreement, or other international instrument on pandemic prevention, preparedness and response’ (also known as WHO CA+, referred to below as: Pandemic Agreement).1 Rightly, the instrument places equity at the centre. Yet, it currently also omits reference to an impactful tool to promote equity that has been adopted in an unprecedented manner during COVID-19—a set of measures known as disadvantage indices. Embedding disadvantage indices would provide concrete constructive guidance; align the Pandemic Agreement with the use of indices by other United Nations (UN) agencies; help realise the Agreement’s goal of addressing social and other determinants of health within countries, and furthermore offer feasible ways improving equity in allocation across countries. WHO member states began work on a Pandemic Agreement in December 2021. The current timeline envisages a final version to be considered by... PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2023-109720 Issue No:Vol. 49, No. 12 (2023)
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Brunning; L. Pages: 799 - 802 Abstract: In the UK, healthcare workers are again considering whether to strike, and the moral status of strike action is being publicly debated. Mpho Selemogo argued that we can think productively about the ethical status of healthcare strikes by using the ethical framework often applied to armed conflict (2014). On this view, strikes need to be just, proportionate, likely to succeed, a last resort, pursued by a legitimate organisation and publicly communicated. In this article, I argue for a different approach to the just war comparison. Selemogo adopts a traditional, collectivist conception of just war reasoning but this is not the only view. So-called ‘individualist’ approaches to the morality of war can also be applied to strike action. Taking an individualist perspective complicates the traditional picture of a dispute arising between three well-defined groups of healthcare workers, employers and the innocent subjects of collateral damage: patients and the public. We arrive instead at a more complicated moral picture: some people might be more morally liable to be harmed than others during a strike, or can justly bear increased risks, and some are more obliged to strike than others. I describe this shift of framework before critically examining some of the traditional jus ad bellum conditions as applied to strikes. PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2023-108941 Issue No:Vol. 49, No. 12 (2023)
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Authors:
Venter, B; Ruck Keene, A, Cronin, A. J. Pages: 803 - 807 Abstract: In February 2022, the Court of Protection was faced with the question of whether a kidney transplant was in the best interests of William Verden. The case highlighted the legal, ethical and clinical complexities of treating potential kidney transplant patients with impaired decision-making. Above all, it exposed the potential risk of discrimination on the basis of disability when treatment decisions in relation to potential kidney recipients with impaired capacity are being made. In this paper, we draw on the Verden case to (1) examine the role of the Court of Protection in cases relating to patients with impaired decision-making capacity who require a transplant, (2) to highlight the lack of empirical data on patients who have faced inequitable access to transplant and (3) highlight the shortcomings of the existing legal and regulatory framework in England and Wales guiding clinical decision making for patients in William’s position. We consequently argue that there is a clear need for action to ensure equitable access to transplant for those in William’s position. Furthermore, we suggest that there is a responsibility incumbent on policy makers and clinicians alike to develop a meaningful, and meaningfully operational, framework centred on preventing discrimination against potential organ recipients based on their decision-making capacity. Keywords:
Editor's choice
PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2022-108746 Issue No:Vol. 49, No. 12 (2023)
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Authors:
Watts, G; Newson, A. J. Pages: 808 - 814 Abstract: Multiple studies show that periodic reanalysis of genomic test results held by clinical laboratories delivers significant increases in overall diagnostic yield. However, while there is a widespread consensus that implementing routine reanalysis procedures is highly desirable, there is an equally widespread understanding that routine reanalysis of individual patient results is not presently feasible to perform for all patients. Instead, researchers, geneticists and ethicists are beginning to turn their attention to one part of reanalysis—reinterpretation of previously classified variants—as a means of achieving similar ends to large-scale individual reanalysis but in a more sustainable manner. This has led some to ask whether the responsible implementation of genomics in healthcare requires that diagnostic laboratories routinely reinterpret their genomic variant classifications and reissue patient reports in the case of materially relevant changes. In this paper, we set out the nature and scope of any such obligation, and analyse some of the main ethical considerations pertaining to a putative duty to reinterpret. We discern and assess three potential outcomes of reinterpretation—upgrades, downgrades and regrades—in light of ongoing duties of care, systemic error risks and diagnostic equity. We argue against the existence of any general duty to reinterpret genomic variant classifications, yet we contend that a suitably restricted duty to reinterpret ought to be recognised, and that the responsible implementation of genomics into healthcare must take this into account. PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2022-108864 Issue No:Vol. 49, No. 12 (2023)
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Authors:
Oerlemans, A. J; Feenstra, I, Yntema, H. G, Boenink, M. Pages: 815 - 816 Abstract: While Gabriel Watts and Ainsley Newson argue that diagnostic laboratories do not have a general duty to routinely reinterpret genomic variant classifications, they do formulate several restricted duties to actively reinterpret specific types of classifications.1 They place these duties with laboratories, acknowledging that they are setting aside any responsibilities that might arise for clinicians. Here, we will discuss the implications of this obligation for clinicians and the moral tension it may confront them with. We focus in particular on the consequences of the proposed moral obligation to actively reinterpret variant classifications that carry a higher risk of being false positives. Such reclassification is likely to result in ‘downgrades’: previously pathogenic variants (pathogenic/likely pathogenic, P/LP) reclassified to benign (likely benign/benign, LB/B) or uncertain variants (variant of uncertain significance, VUS). Any laboratory policy to actively reinterpret (specific sets of) classifications will confront the clinician with the question whether the... PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2023-109441 Issue No:Vol. 49, No. 12 (2023)
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Authors:
Chapman; C. R. Pages: 817 - 818 Abstract: In late 2021, tennis star Chris Evert learned new genetic information about her sister, who died from ovarian cancer in January 2020. As Evert has explained in posts published by ESPN, her sister had a variant in the BRCA1 gene that was reclassified—upgraded—from a variant of uncertain significance (VUS) to pathogenic. Hearing about the variant’s reclassification likely saved Evert’s life. After getting genetic testing that showed she also carried the variant, Evert underwent prophylactic surgery. Clinical testing associated with the procedure revealed she already had stage 1c ovarian cancer. The Wall Street Journal reported on a different variant reclassification story in 2019. Seven female relatives had prophylactic surgeries after cascade genetic testing indicated they each carried the same pathogenic variant in BRCA2. However, there was significant distress and confusion when one of the women received notice that the variant had been downgraded from pathogenic to a VUS. As these... PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2023-109446 Issue No:Vol. 49, No. 12 (2023)
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Authors:
Wolemonwu; V. C. Pages: 819 - 819 Abstract: Central to Watts and Newson’s argument in their seminal paper ‘Is there a duty to routinely reinterpret genomic variant classifications'’ is that diagnostic laboratories are not morally obligated to actively reinterpret variants of uncertain significance (VUS) due to the superior outcomes offered by next-generation sequencing (NGS) compared with traditional methods.1 NGS technologies can identify, analyse and interpret millions of genetic variations at once. For example, ‘the use of conventional molecular assays in clinical contexts could require doing a lot of assays for various mutations. Using these different assays, more tissue may be required. These targets can accurately be questioned using NGS technology in a single test.’2 If NGS-based genomic sequencing is reliable and its output outweighs the potential harm of uncertainties, then, it is plausible to say that those test providers cannot incur a moral duty to actively reinterpret VUS because there won’t be any... PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2023-109447 Issue No:Vol. 49, No. 12 (2023)
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Authors:
Saylor, K. W; Martschenko, D. O. Pages: 820 - 821 Abstract: In their article on the limited duty to reinterpret genetic variants, Watts and Newson argue that clinical labs are not morally obligated to conduct routine reinterpretation despite its potential clinical and personal value.1 We endorse the authors’ argument for a circumscribed duty to reclassify genomic variants in certain cases, including to promote diagnostic equity for racial and ethnic minority populations that have been historically excluded from and exploited by genomic research and medicine. However, given the history and resilience of scientific racism, the use of socially constructed racial and ethnic categories to enhance diagnostic equity raises several ethical and practical challenges. In the short term, using socially constructed racial and ethnic categories to identify patients for variant reclassification is a practical approach for addressing concerns of diagnostic equity. In contrast, diagnostic accuracy depends on patients’ genetic similarity to reference genomes, rather than their socially determined race or... PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2023-109449 Issue No:Vol. 49, No. 12 (2023)
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Authors:
Miller, E; Tang Girdwood, S, Shah, A, Anyigbo, C, Lanphier, E. Pages: 822 - 823 Abstract: We agree with McCullough, Coverdale and Chervenak1 that ‘medical educators and academic leaders are in a pivotal and powerful position to role model’ to counter ‘incivility’ in medicine, which can include ‘dismissing’ or ‘demeaning others’. They note that ‘women may be at greater risk for experiencing incivility compared with men’, as may other individuals who experience ‘patterns of disrespect based on minority status’. The authors promote ‘professionalism’ and ‘etiquette’ to foster civility within medicine. Yet theory and experience suggest that medical educators and academic leaders are also in powerful positions to mobilise these concepts to perpetuate exclusions from, and biases within, medicine, upholding racist, sexist and ableist norms. Mentoring versus microaggressions Feminist methodology reveals how ethical theorising historically excluded views and experiences of marginalised individuals and groups and provides frameworks for interrogating supposedly universal norms. Presuming dominant values and experiences reflect universal ones can further marginalise... PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2023-109295 Issue No:Vol. 49, No. 12 (2023)
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Authors:
Watts, G; Newson, A. J. Pages: 824 - 825 Abstract: The results of tests carried out using next-generation genomic sequencing (NGS) possess a peculiar and perhaps unique ‘diagnostic durability’. Unlike most other forms of testing, if genomic results or data are stored over time, then it remains possible to interrogate that information indefinitely, without having to retest the patient. Another peculiar property of genomic results is that their interpretations are subject to change within relatively short time frames. For instance, a genomic variant that is of uncertain significance (VUS) at the time of testing may shortly afterwards come to be understood as pathogenic (P) or benign (B). Moreover, variant classifications might be downgraded from likely pathogenic to VUS or B, or regraded from B to VUS. These two properties of genomic testing have important implications for the responsible implementation of genomic testing in healthcare. One of these is that they prompt the question whether diagnostic laboratories are morally required... PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2023-109615 Issue No:Vol. 49, No. 12 (2023)
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Authors:
Villiger, D; Trachsel, M. Pages: 826 - 832 Abstract: Psychedelics are experiencing a renaissance in mental healthcare. In recent years, more and more early phase trials on psychedelic-assisted therapy have been conducted, with promising results overall. However, ethical analyses of this rediscovered form of treatment remain rare. The present paper contributes to the ethical inquiry of psychedelic-assisted therapy by analysing the ethical implications of its therapeutic mechanisms proposed by the relaxed beliefs under psychedelics (REBUS) hypothesis. In short, the REBUS hypothesis states that psychedelics make rigid beliefs revisable by increasing the influence of bottom-up input. Put differently, patients become highly suggestible and sensitive to context during a psychedelic session, amplifying therapeutic influence and effects. Due to that, patients are more vulnerable in psychedelic-assisted therapy than in other therapeutic interventions; they lose control during a psychedelic session and become dependent on the therapeutic setting (including the therapist). This enhanced vulnerability is ethically relevant and has been exploited by some therapists in the past. Therefore, patients in current research settings and starting mainstream medical settings need to be well informed about psychedelics’ mechanisms and their implications to give valid informed consent to treatment. Furthermore, other security measures are warranted to protect patients from the vulnerability coming with psychedelic-assisted therapy. PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2022-108816 Issue No:Vol. 49, No. 12 (2023)
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Authors:
Ip; E. C. Pages: 833 - 837 Abstract: Humans and other species depend on the planet’s well-being to survive and flourish. The health of the planet and its ecosystems is under threat from anthropogenic climate change, pollution and biodiversity loss. The promotion of planetary health against entrenched degradation of nature urgently requires ethical guidance. Using an ecocentric virtue jurisprudence approach, this article argues that the highest end of safeguarding planetary health is to secure the flourishing of the Earth community, of which the flourishing of humanity is but one component. The article demonstrates how law, despite its historic role in facilitating our present planetary crisis, has an untapped potential to redeem itself by promoting planetary flourishing through the creation of conditions conducive to the practice of moral virtues, which can help meet the challenges of the Anthropocene. Once given an ecocentric interpretation, the cardinal virtues of prudence, justice, courage and moderation, as well as their subvirtues, can justify or produce legal structures that address everything from the human right to a healthy environment to the rights of nature. PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2022-108759 Issue No:Vol. 49, No. 12 (2023)
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Authors:
Kerasidou, C; Malone, M, Daly, A, Tava, F. Pages: 838 - 843 Abstract: Digitalisation of health and the use of health data in artificial intelligence, and machine learning (ML), including for applications that will then in turn be used in healthcare are major themes permeating current UK and other countries’ healthcare systems and policies. Obtaining rich and representative data is key for robust ML development, and UK health data sets are particularly attractive sources for this. However, ensuring that such research and development is in the public interest, produces public benefit and preserves privacy are key challenges. Trusted research environments (TREs) are positioned as a way of balancing the diverging interests in healthcare data research with privacy and public benefit. Using TRE data to train ML models presents various challenges to the balance previously struck between these societal interests, which have hitherto not been discussed in the literature. These challenges include the possibility of personal data being disclosed in ML models, the dynamic nature of ML models and how public benefit may be (re)conceived in this context. For ML research to be facilitated using UK health data, TREs and others involved in the UK health data policy ecosystem need to be aware of these issues and work to address them in order to continue to ensure a ‘safe’ health and care data environment that truly serves the public. Keywords:
Open access
PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2022-108696 Issue No:Vol. 49, No. 12 (2023)
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Authors:
Fystro, J. R; Feiring, E. Pages: 844 - 849 Abstract: BackgroundPatients not attending their appointments without giving notice burden healthcare services. To reduce non-attendance rates, patient non-attendance fees have been introduced in various settings. Although some argue in narrow economic terms that behavioural change as a result of financial incentives is a voluntary transaction, charging patients for non-attendance remains controversial. This paper aims to investigate the controversies of implementing patient non-attendance fees.ObjectiveThe aim was to map out the arguments in the Norwegian public debate concerning the introduction and use of patient non-attendance fees at public outpatient clinics.MethodsPublic consultation documents (2009–2021) were thematically analysed (n=84). We used a preconceived conceptual framework based on the works of Grant to guide the analysis.ResultsA broad range of arguments for and against patient non-attendance fees were identified, here referring to the acceptability of the fees’ purpose, the voluntariness of the responses, the effects on the individual character and institutional norms and the perceived fairness and comparative effectiveness of patient non-attendance fees. Whereas the aim of motivating patients to keep their appointments to avoid poor utilisation of resources and increased waiting times was widely supported, principled and practical arguments against patient non-attendance fees were raised.ConclusionA narrow economic understanding of incentives cannot capture the breadth of arguments for and against patient non-attendance fees. Policy makers may draw on this insight when implementing similar incentive schemes. The study may also contribute to the general debate on ethics and incentives. Keywords:
Open access
PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2022-108856 Issue No:Vol. 49, No. 12 (2023)
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Authors:
Hardman, D; Hutchinson, P. Pages: 850 - 851 Abstract: In Where the Ethical Action Is, we argued that medical and ethical modes of thought are not different in kind but different aspects of a situation. One of the consequences of this argument is that the requirement for or benefits of normative moral theorising in bioethics is undercut. In response, Wagner has argued that normative moral theories should be reconceived as models. Wagner’s argument seems to be that once reconceived as models, the rationale for moral theorising, undercut by our arguments in Where the Ethical Action Is, will be re-established because we will see those moral-theories-now-rebranded-as-models as serving a role akin to the role models serve in some of the natural sciences. In this response to Wagner, we provide two arguments against Wagner’s proposal. We call these arguments the Turner-Cicourel Challenge and the Question Begging Challenge. Keywords:
Open access
PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2023-108958 Issue No:Vol. 49, No. 12 (2023)
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Authors:
Blackshaw; B. P. Pages: 852 - 853 Abstract: Hersey et al have outlined a proposed ethical framework for assessing abortion policies that locates the effect of government legislation between the provider and the patient, emphasising its influence on interactions between them. They claim that their framework offers an alternative to the personal moral claims that lie behind legislation restricting abortion access. However, they fail to observe that their own understanding of reproductive justice and the principles of medical ethics are similarly predicated on their individual moral beliefs. Consequently, the conclusions obtained from their framework are also derived from their individual beliefs, and have no claim to being objective. PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2023-108948 Issue No:Vol. 49, No. 12 (2023)
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Authors:
Qurashi; G. M. Pages: 854 - 859 Abstract: The Organ Donation Act 2019 has introduced an opt-out organ donor register in England, meaning that consent to the donation of organs upon death is presumed unless an objection during life was actively expressed. By assessing the rights of the dead over their organs, the sick to those same organs, and the role of consent in their requisition, this paper interrogates whether such paradigms for deceased organ donation are ethically justifiable. Where legal considerations are applicable, I focus on the recent changes in England as a case in point; however, this paper ultimately challenges the justifiability of opt-out systems in any form, concluding that ethical solutions to organ shortage do not lie in opt-out systems of deceased organ procurement. PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/medethics-2021-107630 Issue No:Vol. 49, No. 12 (2023)
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Authors:
Mussell, R; Hamm, D. Pages: 861 - 862 Abstract: United nations climate change conference Health will feature more prominently at this year’s United Nations Conference of the Parties (COP) to the Framework Convention on Climate Change. COP281 will include a ‘Health/Relief/Recovery and Peace’ day on the 3 December. The health day inevitably engages issues of equity and justice. It includes perspectives on identifying and scaling up adaption measures to address health impacts of climate change, acknowledging ‘findings that climate-sensitive health risks are disproportionately felt by the most vulnerable and disadvantaged, including women, children, ethnic minorities, lower-income communities, migrants or displaced persons, older populations, and those with underlying health conditions’; reflections on what is known and not understood about the impacts of climate change on mental health, and potential ways to address this; ‘action-oriented’ look at responses to the ‘unprecedented levels of climate and disaster displacement, including on those communities already facing multiple crisis’; and an... PubDate: 2023-11-23T01:23:21-08:00 DOI: 10.1136/jme-2023-109639 Issue No:Vol. 49, No. 12 (2023)
