Medicine Health Care and Philosophy最新文献

{"title":"Biobank consent under the GDPR: are potential sample donors informed about all lawful uses of biobank data?","authors":"Emmi Kaaya","doi":"10.1007/s11019-024-10227-6","DOIUrl":"10.1007/s11019-024-10227-6","url":null,"abstract":"<p><p>This paper analyses the information disclosures in two biobank consent documents used by biobanks operating under the General Data Protection Regulation (GDPR). The aim of the analysis is to investigate how these documents inform potential sample donors about possible future uses of biobank data. The findings suggest that the consent documents provide potentially misleading information regarding the range of possible future uses of biobank data. Based on these information disclosures, potential sample donors may reasonably believe that the data can only be used for a narrowly defined range of research purposes. However, the range of lawful uses of the data is much broader and less clearly defined. Consent provided based on misleading information is not morally transformative, even if it were legally valid. To facilitate morally transformative biobank consent, this paper provides two recommendations for information disclosure to potential sample donors regarding future uses of biobank data: first, potential sample donors should be informed about the legal scope of consent; and second, they should be informed about the full range of lawful uses of biobank data.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"567-577"},"PeriodicalIF":2.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142394230","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":"Non-empirical methods for ethics research on digital technologies in medicine, health care and public health: a systematic journal review.","authors":"Frank Ursin, Regina Müller, Florian Funer, Wenke Liedtke, David Renz, Svenja Wiertz, Robert Ranisch","doi":"10.1007/s11019-024-10222-x","DOIUrl":"10.1007/s11019-024-10222-x","url":null,"abstract":"<p><p>Bioethics has developed approaches to address ethical issues in health care, similar to how technology ethics provides guidelines for ethical research on artificial intelligence, big data, and robotic applications. As these digital technologies are increasingly used in medicine, health care and public health, thus, it is plausible that the approaches of technology ethics have influenced bioethical research. Similar to the \"empirical turn\" in bioethics, which led to intense debates about appropriate moral theories, ethical frameworks and meta-ethics due to the increased use of empirical methodologies from social sciences, the proliferation of health-related subtypes of technology ethics might have a comparable impact on current bioethical research. This systematic journal review analyses the reporting of ethical frameworks and non-empirical methods in argument-based research articles on digital technologies in medicine, health care and public health that have been published in high-impact bioethics journals. We focus on articles reporting non-empirical research in original contributions. Our aim is to describe currently used methods for the ethical analysis of ethical issues regarding the application of digital technologies in medicine, health care and public health. We confine our analysis to non-empirical methods because empirical methods have been well-researched elsewhere. Finally, we discuss our findings against the background of established methods for health technology assessment, the lack of a typology for non-empirical methods as well as conceptual and methodical change in bioethics. Our descriptive results may serve as a starting point for reflecting on whether current ethical frameworks and non-empirical methods are appropriate to research ethical issues deriving from the application of digital technologies in medicine, health care and public health.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"513-528"},"PeriodicalIF":2.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11519279/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141908010","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":"Healthcare providers' advocacy approaches and ethical challenges in delivering healthcare to undocumented migrants: a scoping review.","authors":"Fayez Abdulrazeq, Julian März, Nikola Biller-Andorno, Chris Gastmans","doi":"10.1007/s11019-024-10225-8","DOIUrl":"10.1007/s11019-024-10225-8","url":null,"abstract":"<p><p>Delivering healthcare to undocumented migrants presents a complex challenge for healthcare providers. Integrating advocacy efforts into their daily practices can be ambiguous in practical terms, stemming from the intricate task of addressing the health needs of this population while simultaneously advocating for their health rights within the constraints imposed on them. This study seeks to consolidate findings from literature regarding the advocacy approaches employed by healthcare providers and the correlated ethical challenges. We conducted a scoping review of qualitative literature by systematically searching four databases-PubMed/Medline, Embase, Cinahl, and Cochrane Library. For developing our search strategy, we employed the PICO (Population, Intervention, Comparison, Outcome) scheme. Our analysis followed the qualitative content analysis approach proposed by Graneheim and Lundman. 30 studies were included, revealing a cumulative total of 915 healthcare providers who were interviewed. A total of 30 themes emerged comprising 14 advocacy approaches and 16 ethical challenges. Healthcare providers made a deliberate choice to engage in advocacy, responding to injustices experienced by undocumented migrants. The spectrum of advocacy initiatives varied, encompassing voluntary participation in healthcare provision, empathetic understanding, and healthcare-focused strategies. We also identified numerous correlated ethical challenges, necessitating healthcare providers to strike a balance between their eagerness to assist and their professional competence, respect the autonomy of undocumented migrants, and establish trust with them. These findings not only offer practical guidance for healthcare providers to enhance accessibility to healthcare services for undocumented migrant patients but also foster awareness of the ethical challenges that may arise in their advocacy roles.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"579-606"},"PeriodicalIF":2.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11519158/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142382030","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":"Embracing ambivalence and hesitation: a Ricoeurian perspective on anticipatory choice processes at the end of life.","authors":"Els van Wijngaarden","doi":"10.1007/s11019-024-10228-5","DOIUrl":"10.1007/s11019-024-10228-5","url":null,"abstract":"<p><p>Especially older adults are increasingly stimulated to think about, talk about and record their preferences with regard to future (health)care decisions, preferably in a pro-active manner. In this paper, I analyse these anticipatory choice processes. My goal is twofold: Firstly, to provide a deeper understanding of what it actually means to decide in advance about end-of-life treatments or options. Secondly, to make a theoretical contribution to bioethics and ACP-theories by rethinking the concept of end-of-life choices from a phenomenological viewpoint. To achieve this, I start by presenting a case narrative that elucidates how these anticipatory choices are lived. Secondly, I map out a theoretical framework about choice based on the phenomenology of the will of Paul Ricoeur. Finally, guided by this Ricoeurian framework, I investigate the potential meaning of choice in the context of contemporary advance care planning trajectories. The analysis demonstrates that choice and agency always imply notions of passivity and uncontrollability. It also indicates the significant value of hesitation and ambivalence. Moreover, it highlights the importance of the notion of co-responsibility in the context of anticipated end-of-life choices, and the relevant distinction between a (willed) choice and a wish. To improve care and support regarding end-of-life trajectories and to promote meaningful conversations, it is imperative to integrate these underrated elements more substantially in our theories, language and practical approaches. I conclude by suggesting that, in order to do justice to the real-life complexities, we might even need to revise the notion of advance 'directives'.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"555-566"},"PeriodicalIF":2.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11519185/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142378431","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":"Debates on humanization of human-animal brain chimeras - are we putting the cart before the horses?","authors":"Bor Luen Tang","doi":"10.1007/s11019-024-10209-8","DOIUrl":"10.1007/s11019-024-10209-8","url":null,"abstract":"<p><p>Research on human-animal chimeras have elicited alarms and prompted debates. Those involving the generation of chimeric brains, in which human brain cells become anatomically and functionally intertwined with their animal counterparts in varying ratios, either via xenografts or embryonic co-development, have been considered the most problematic. The moral issues stem from a potential for \"humanization\" of the animal brain, as well as speculative changes to the host animals' consciousness or sentience, with consequential alteration in the animal hosts' moral status. However, critical background knowledge appears to be missing to resolve these debates. Firstly, there is no consensus on animal sentience vis-à-vis that of humans, and no established methodology that would allow a wholesome and objective assessment of changes in animal sentience resulting from the introduction of human brain cells. Knowledge in interspecies comparative neuropsychology that could allow effective demarcation of a state of \"humanization\" is also lacking. Secondly, moral status as a philosophical construct has no scientific and objective points of reference. Either changes in sentience or humanization effects would remain unclear unless there are some neuroscientific research grounding. For a bioethical stance based on moral status of human-animal brain chimera to make meaningful contributions to regulatory policies, it might first need to be adequately informed by, and with its arguments constructed, in a manner that are factually in line with the science. In may be prudent for approved research projects involving the generation of human-animal brain chimera to have a mandatory component of assessing plausible changes in sentience.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"359-366"},"PeriodicalIF":2.3,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141155745","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":"Is a larger patient benefit always better in healthcare priority setting?","authors":"Lars Sandman, Jan Liliemark, Erik Gustavsson, Martin Henriksson","doi":"10.1007/s11019-024-10208-9","DOIUrl":"10.1007/s11019-024-10208-9","url":null,"abstract":"<p><p>When considering the introduction of a new intervention in a budget constrained healthcare system, priority setting based on fair principles is fundamental. In many jurisdictions, a multi-criteria approach with several different considerations is employed, including severity and cost-effectiveness. Such multi-criteria approaches raise questions about how to balance different considerations against each other, and how to understand the logical or normative relations between them. For example, some jurisdictions make explicit reference to a large patient benefit as such a consideration. However, since patient benefit is part of a cost-effectiveness assessment it is not clear how to balance considerations of greater patient benefit against considerations of severity and cost-effectiveness. The aim of this paper is to explore the role of a large patient benefit as an independent criterion for priority setting in a healthcare system also considering severity and cost-effectiveness. By taking the opportunity cost of new interventions (i.e., the health forgone in patients already receiving treatment) into account, we argue that patient benefit has a complex relationship to priority setting. More specifically, it cannot be reasonably concluded that large patient benefits should be given priority if severity, cost-effectiveness, and opportunity costs are held constant. Since we cannot find general support for taking patient benefit into account as an independent criterion from any of the most discussed theories about distributive justice: utilitarianism, prioritarianism, telic egalitarianism and sufficientarianism, it is reasonable to avoid doing so. Hence, given the complexity of the role of patient benefit, we conclude that in priority practice, a large patient benefit should not be considered as an independent criterion, on top of considerations of severity and cost-effectiveness.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"349-357"},"PeriodicalIF":2.3,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11310225/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141187088","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":"Why we should not \"help bad choosers:\" screening, nudging, and epistemic risk.","authors":"Jay Zameska","doi":"10.1007/s11019-024-10217-8","DOIUrl":"10.1007/s11019-024-10217-8","url":null,"abstract":"<p><p>One prominent line of support for nudging in screening programs is the claim that nudging can help 'bad choosers' - that is, it can help some patients make choices more in line with their own values and preferences. In this article, I argue that due to the presence of epistemic risk in many screening programs, the argument that nudging can help 'bad choosers' should be revised or rejected. Expanding on the work of Biddle, J. B. 2020. Epistemic risks in cancer screening: Implications for ethics and policy. Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 79: 101200.), I argue that epistemic risk undermines the argument that nudging can help to promote patient autonomy in the context of screening. Specifically, I argue that epistemic risk results in the inclusion of non-patient values and preferences in the screening process, which challenges the claim that nudging can help patients make choices more in line with their own values and preferences. I present four reasons to think epistemic risk undermines the argument in this way: (1) conflicting values; (2) lack of transparency; (3) limited autonomy in opting out; (4) unjustified manipulation. The presence of epistemic risk in screening programs means that nudging may not always be an effective means of promoting patient autonomy and informed consent. As such, epistemic risk poses significant challenges to at least one ethical justification of nudging in screening programs, and raises further questions about the role of nudging in promoting patient decision-making.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"419-429"},"PeriodicalIF":2.3,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11310277/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141555703","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":"Mapping the postwar legacies of eugenics in socialist countries: a conceptual history of eugenics in Hungary.","authors":"Péter Kakuk, Judit Sándor","doi":"10.1007/s11019-024-10218-7","DOIUrl":"10.1007/s11019-024-10218-7","url":null,"abstract":"<p><p>The paper aims to understand the various legacies of eugenics in the postwar period to recognize both the continuities and discontinuities of eugenics with an approach which is both conceptually sound and historically correct. Building on earlier work of Lene Koch, the paper endeavours to chart the historical trajectory of eugenics by examining how its definition and those of its related or oppositional concepts have evolved within selected lexicon entries across various stages of the century. The inclusion and publication of a concept within a lexicon indicate its significance, linguistic vitality, and prevalence in public discourse. These entries serve as a window into the contemporary understanding and application of concepts over an entire century, offering insights into the practices of eugenics as interpreted by the authoritative scholars of the era. Additionally, these lexicon entries offer more than just a mirror to the past's prevailing attitudes. The very act of articulating a concept may be viewed as a pivotal element in social struggles, influencing the course of eugenic practices and their interpretations. Both conceptual history and discourse analysis share common ground in their perception of concepts, considering the use of language as a social activity endowed with performative capabilities. They recognize that language does not merely reflect reality but can actively shape it, playing a significant role in societal dynamics and power relations. The Hungarian lexicon entries on eugenics reveal notable disparities in the identified content, the periodization, and the evolution of changes when compared to Lene Koch's earlier study on Scandinavian eugenics. In Hungary, the concept of eugenics underwent significant changes over four successive periods. The history and interpretation of eugenics can vary significantly from one country to another. Different nations have had their unique experiences and trajectories with the eugenics movement, which have been shaped by their specific cultural, political, and social contexts. These variations emphasize the importance of considering the localized and historical perspectives when examining the concept of eugenics.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"431-443"},"PeriodicalIF":2.3,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11310220/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141628071","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":"Diagnostic staging and stratification in psychiatry and oncology: clarifying their conceptual, epistemological and ethical implications.","authors":"Julia Tinland, Christophe Gauld, Pierre Sujobert, Élodie Giroux","doi":"10.1007/s11019-024-10207-w","DOIUrl":"10.1007/s11019-024-10207-w","url":null,"abstract":"<p><p>Staging and stratification are two diagnostic approaches that have introduced a more dynamic outlook on the development of diseases, thus participating in blurring the line between the normal and the pathological. First, diagnostic staging, aiming to capture how diseases evolve in time and/or space through identifiable and gradually more severe stages, may be said to lean on an underlying assumption of \"temporal determinism\". Stratification, on the other hand, allows for the identification of various prognostic or predictive subgroups based on specific markers, relying on a more \"mechanistic\" or \"statistical\" form of determinism. There are two medical fields in which these developments have played a significant role and have given rise to sometimes profound nosological transformations: oncology and psychiatry. Drawing on examples from these two fields, this paper aims to provide much needed conceptual clarifications on both staging and stratification in order to outline how several epistemological and ethical issues may, in turn, arise. We argue that diagnostic staging ought to be detached from the assumption of temporal determinism, though it should still play an essential role in adapting interventions to stage. In doing so, it would help counterbalance stratification's own epistemological and ethical shortcomings. In this sense, the reflections and propositions developed in psychiatry can offer invaluable insights regarding how adopting a more transdiagnostic and cross-cutting perspective on temporality and disease dynamics may help combine both staging and stratification in clinical practice.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"333-347"},"PeriodicalIF":2.3,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140960222","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":"Indignity of Nazi data: reflections on the utilization of illicit research.","authors":"Iman Farahani, Joel Janhonen","doi":"10.1007/s11019-024-10212-z","DOIUrl":"10.1007/s11019-024-10212-z","url":null,"abstract":"<p><p>Human rights may feel self-apparent to us, but less than 80 years ago, one of the most advanced countries at the time acted based on an utterly contrary ideology. The view of social Darwinism that abandoned the idea of the intrinsic value of human lives instead argued that oppression of the inferior is not only inevitable but desirable. One of the many catastrophic outcomes is the medical data obtained from inhuman experiments at concentration camps. Ethical uncertainty over whether the resulting insights should be a part of the medical literature provides a chance to consider the seemingly irreplaceable social construct of human dignity. Would any medical benefit justify the utilization of this illicit data? Would utilization even qualify as an insult to the dignity of the exploited subjects, or is this a question about intersubjective meaning? This work discusses the wisdom in blind adherence to human dignity, the possibility of retrospective insults, moral complicity, contrary viewpoints, and possible resolutions.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":"381-387"},"PeriodicalIF":2.3,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11310257/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141262808","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}