BioethicsPub Date : 2024-04-25DOI: 10.1111/bioe.13294
Jesse Gray, S. Segers, Heidi Mertes
{"title":"The information, control, and value models of mobile health-driven empowerment.","authors":"Jesse Gray, S. Segers, Heidi Mertes","doi":"10.1111/bioe.13294","DOIUrl":"https://doi.org/10.1111/bioe.13294","url":null,"abstract":"Mobile health tools are often said to empower users by providing them with the information they need to exercise control over their health. We aim to bring clarity to this claim, and in doing so explore the relationship between empowerment and autonomy. We have identified three distinct models embedded in the empowerment rhetoric: empowerment as information, empowerment as control, and empowerment as values. Each distinct model of empowerment gives rise to an associated problem. These problems, the Problem of Interpretation, the Value Alignment Problem, and the Priority Problem, show that mobile health tools in their current form are either insufficient for empowerment or are self-defeating. These digital health technologies encourage users to adopt an individualized conception of autonomy, one that may weaken the doctor-patient relationship and undermine practices in shared decision making, and ultimately may not deliver on improving the health outcomes for those that need it the most.","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":null,"pages":null},"PeriodicalIF":2.2,"publicationDate":"2024-04-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140657151","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}
BioethicsPub Date : 2024-04-24DOI: 10.1111/bioe.13291
Jasper Debrabander
{"title":"On subjective measures of decision quality","authors":"Jasper Debrabander","doi":"10.1111/bioe.13291","DOIUrl":"10.1111/bioe.13291","url":null,"abstract":"<p>In times of person-centered care, it is all the more important to support patients in making good decisions about their care. One way to offer such support to patients is by way of Patient Decision Aids (PDAs). Ranging from patient brochures to web-based tools, PDAs explicitly state the decisions patients face, inform them about their medical options, help them to clarify and discuss their values, and ultimately make a decision. However, lingering discussions surround effectiveness research on PDAs. In this article, I focus on two subjective measures of decision quality that are widely used as outcome measures in effectiveness research on PDAs (i.e., the Decisional Conflict Scale (DCS) and measures of regret). Although these measurement instruments have attracted critical attention in the scientific literature, bioethicists have hardly engaged with them. Therefore, I set myself to analyze the relationship between (the different subscales of) the DCS and measures of regret, on the one hand, and ethical principles such as beneficence and autonomy, on the other hand. In light of that analysis, I will clarify some discussions regarding the use of these measures of decision quality in effectiveness research on PDAs. This should help us to align the way we evaluate PDAs with ethical principles and avoid that our attempts to support patients in making good decisions about their care that is so central to person-centered care point in unethical directions.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":null,"pages":null},"PeriodicalIF":2.2,"publicationDate":"2024-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140659174","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}
BioethicsPub Date : 2024-04-23DOI: 10.1111/bioe.13289
William Simkulet
{"title":"Parthenogenesis, identity, and value","authors":"William Simkulet","doi":"10.1111/bioe.13289","DOIUrl":"10.1111/bioe.13289","url":null,"abstract":"<p>Parthenogenesis is a form of asexual reproduction in which a gamete (ovum or sperm) develops without being fertilized. Tomer Jordi Chaffer uses parthenogenesis to challenge Don Marquis' future-like-ours (FLO) argument against abortion. According to Marquis, (1) what makes it morally wrong to kill us is that it would deprive us of a possible future that we might come to value—a future “like ours” (FLO) and (2) human fetuses are numerically identical to any adult human organism they may develop into, and thus have a FLO. Chaffer contends that if human ova are capable of parthenogenesis, then they would have a FLO, which contraception may deprive them of, but contends this is absurd. Bruce P. Blackshaw challenges Chaffer, contending sexually fertilized embryos are not identical to unfertilized ovum, but this would yield a more absurd implication, that fertilization deprives an ovum of a FLO! Here I show Marquis' account of identity rules out both Chaffer's and Blackshaw's accounts.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":null,"pages":null},"PeriodicalIF":2.2,"publicationDate":"2024-04-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140669661","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}
BioethicsPub Date : 2024-04-20DOI: 10.1111/bioe.13292
Tess Johnson
{"title":"Stewardship according to context: Justifications for coercive antimicrobial stewardship policies in agriculture and their limitations","authors":"Tess Johnson","doi":"10.1111/bioe.13292","DOIUrl":"10.1111/bioe.13292","url":null,"abstract":"<p>Antimicrobial resistance (AMR) is an urgent, global threat to public health. The development and implementation of effective measures to address AMR is vitally important but presents important ethical questions. This is a policy area requiring further sustained attention to ensure that policies proposed in National Action Plans on AMR are ethically acceptable and preferable to alternatives that might be fairer or more effective, for instance. By ethically analysing case studies of coercive actions to address AMR across countries, we can better inform policy in a context-specific manner. In this article, I consider an example of coercive antimicrobial stewardship policy in Canada, namely restrictions on livestock farmers' access to certain antibiotics for animal use without a vet's prescription. I introduce and analyse two ethical arguments that might plausibly justify coercive action in this case: the harm principle and a duty of collective easy rescue. In addition, I consider the factors that might generally limit the application of those ethical concepts, such as challenges in establishing causation or evidencing the scale of the harm to be averted. I also consider specifics of the Canadian context in contrast to the UK and Botswana as example settings, to demonstrate how context-specific factors might mean a coercive policy that is ethically justified in one country is not so in another.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":null,"pages":null},"PeriodicalIF":2.2,"publicationDate":"2024-04-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.13292","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140627560","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}
BioethicsPub Date : 2024-04-20DOI: 10.1111/bioe.13288
Joan Llorca Albareda, Pablo García-Barranquero
{"title":"Old by obsolescence: The paradox of aging in the digital era","authors":"Joan Llorca Albareda, Pablo García-Barranquero","doi":"10.1111/bioe.13288","DOIUrl":"10.1111/bioe.13288","url":null,"abstract":"<p>Geroscience and philosophy of aging have tended to focus their analyses on the biological and chronological dimensions of aging. Namely, one ages with the passage of time and by experiencing the cellular-molecular deterioration that accompanies this process. However, our concept of aging depends decisively on the social valuations held about it. In this article, we will argue that, if we study social aging in the contemporary world, a novel phenomenon can be identified: the paradox of aging in the digital era. If the social understanding of aging today is linked to unproductivity and obsolescence; then there is a possibility that, given the pace of change of digital technologies, we become obsolete at an early chronological and biological age, and therefore, feel old at a younger age. First, we will present the social dimension of aging based on Rowe and Kahn's model of successful aging. We will also show that their notion of social aging hardly considers structural aspects and weakens their approach. Second, departing from social aging in its structural sense, we will develop the paradox of aging in the digital era. On the one hand, we will explain how the institutionalization of aging has occurred in modern societies and how it is anchored in the concepts of obsolescence and productivity. On the other hand, we will state the kind of obsolescence that digitalization produces and argue that it can make cohorts of biologically and chronologically young individuals obsolete, and thus they would be personally and socially perceived as old.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-04-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.13288","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140627559","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}
BioethicsPub Date : 2024-04-19DOI: 10.1111/bioe.13293
Alexandra Kapeller PhD
{"title":"Phenomenology and empowerment in self-testing apps","authors":"Alexandra Kapeller PhD","doi":"10.1111/bioe.13293","DOIUrl":"10.1111/bioe.13293","url":null,"abstract":"<p>Although self-testing apps, a form of mobile health (mHealth) apps, are often marketed as empowering, it is not obvious how exactly they can empower their users—and in which sense of the word. In this article, I discuss two conceptualisations of empowerment as polar opposites—one in health promotion/mHealth and one in feminist theory—and demonstrate how both their applications to individually used self-testing apps run into problems. The first, prevalent in health promotion and mHealth, focuses on internal states and understands empowerment as an individual process. However, this version of empowerment has been accused of paternalism and responsibilisation. The second, feminist version considers structural conditions and foregrounds collective, political change, whose realisation is not obviously attainable for an individually used app. By pointing out the flaws of the positions that focus on either internal states or external conditions, and by engaging with theory from critical phenomenology, I argue that the interplay between them is where empowerment can take place. I propose to formulate empowerment in phenomenological terms as a shift in being-in-the-world and discuss how this conceptualisation of empowerment would avoid the criticism of previous empowerment narratives while being realisable by self-testing apps.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-04-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.13293","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140627561","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}
BioethicsPub Date : 2024-04-16DOI: 10.1111/bioe.13286
Udo Schuklenk
{"title":"Time to rethink assisted dying?","authors":"Udo Schuklenk","doi":"10.1111/bioe.13286","DOIUrl":"https://doi.org/10.1111/bioe.13286","url":null,"abstract":"<p>I wrote some years ago in these pages that the ethical debate on assisted suicide and euthanasia is essentially settled in favour of these practices.1 The number of jurisdictions, not only in the global north, but also in the global south, that introduce assisted dying in some form or shape has since continued to increase, and no attempts have been made to reverse such policy changes. Addressing dire warnings about slippery slopes in this context has turned into the academic equivalent of whack-a-mole type writing. When one claim about a supposed slippery slope has been debunked, a variety of it pops up just around the corner.2 If it wasn't for the ominous reason why Sisyphus was punished by the gods, one could be tempted to describe the task of debunking slippery-slope writings in the context of assisted dying as a Sisyphean task. Very high public support for assisted dying, that remains remarkably stable over time, and across jurisdictions, could be interpreted as the public seeing right through this slippery-slope mongering, or, perhaps more disconcertingly, most people do not care about the truth or otherwise of these arguments.</p><p>The academic and policy debates have rightly moved on from the more traditional philosophical ruminations about the ethics of euthanasia to three other issues: (1) scope, and eligibility thresholds, that is the question of who should be eligible to access an assisted death; (2) the problematic issue of advance directives; and (3) the role of healthcare professionals in the provision of assisted dying.</p><p>Let me reconsider here primarily the first, and very briefly the third issue. They have become the focus of sustained debate in jurisdictions that consider introducing assisted dying, as well as in countries that have restrictive eligibility regimes and face pressures to consider more permissive regulations. Historically, assisted dying lobby groups and their academic allies have focused on the paradigmatic terminally ill person experiencing uncontrolled pain.3 Terminal illness is today a common access threshold that, on closer examination, is difficult to defend as a necessary condition. There are a few jurisdictions where terminal illness isn't a necessary condition to become eligible for an assisted death, but they remain in the minority. The main reason, I suspect, for why terminal illness—usually understood as being within 6 months of natural death— is a common access threshold is the view that even if someone may have made a mistake in asking for, and receiving, an assisted death, they lost comparably little, given their impending demise. The same cannot be said for people who request an assisted death who are not dying imminently. What if they are mistaken in their decision? It is arguable that decisionally capable people, who aren't terminally ill, have an even stronger autonomy-based case to access assisted dying. The reason is that those whose intractable condition renders their life—in their own","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":null,"pages":null},"PeriodicalIF":2.2,"publicationDate":"2024-04-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.13286","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140556106","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}
BioethicsPub Date : 2024-04-11DOI: 10.1111/bioe.13284
Leah Pierson
{"title":"Accounting for future populations in health research","authors":"Leah Pierson","doi":"10.1111/bioe.13284","DOIUrl":"10.1111/bioe.13284","url":null,"abstract":"<p>The research we fund today will improve the health of people who will live tomorrow. But future people will not all benefit equally: decisions we make about what research to prioritize will predictably affect when and how much different people benefit from research. Organizations that fund health research should thus fairly account for the health needs of future populations when setting priorities. To this end, some research funders aim to allocate research resources in accordance with disease burden, prioritizing illnesses that cause more morbidity and mortality. In this article, I defend research funders' practice of aligning research funding with disease burden but argue that funders should aim to align research funding with future—rather than present—disease burden. I suggest that research funders should allocate research funding in proportion to aggregated estimates of disease burden over the period when research could plausibly start to yield benefits until indefinitely into the future.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":null,"pages":null},"PeriodicalIF":2.2,"publicationDate":"2024-04-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140589403","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}
BioethicsPub Date : 2024-03-30DOI: 10.1111/bioe.13281
Robert Vandersluis, Julian Savulescu
{"title":"The selective deployment of AI in healthcare","authors":"Robert Vandersluis, Julian Savulescu","doi":"10.1111/bioe.13281","DOIUrl":"10.1111/bioe.13281","url":null,"abstract":"<p>Machine-learning algorithms have the potential to revolutionise diagnostic and prognostic tasks in health care, yet algorithmic performance levels can be materially worse for subgroups that have been underrepresented in algorithmic training data. Given this epistemic deficit, the inclusion of underrepresented groups in algorithmic processes can result in harm. Yet delaying the deployment of algorithmic systems until more equitable results can be achieved would avoidably and foreseeably lead to a significant number of unnecessary deaths in well-represented populations. Faced with this dilemma between equity and utility, we draw on two case studies involving breast cancer and melanoma to argue for the selective deployment of diagnostic and prognostic tools for some well-represented groups, even if this results in the temporary exclusion of underrepresented patients from algorithmic approaches. We argue that this approach is justifiable when the inclusion of underrepresented patients would cause them to be harmed. While the context of historic injustice poses a considerable challenge for the ethical acceptability of selective algorithmic deployment strategies, we argue that, at least for the case studies addressed in this article, the issue of historic injustice is better addressed through nonalgorithmic measures, including being transparent with patients about the nature of the current epistemic deficits, providing additional services to algorithmically excluded populations, and through urgent commitments to gather additional algorithmic training data from excluded populations, paving the way for universal algorithmic deployment that is accurate for all patient groups. These commitments should be supported by regulation and, where necessary, government funding to ensure that any delays for excluded groups are kept to the minimum. We offer an ethical algorithm for algorithms—showing when to ethically delay, expedite, or selectively deploy algorithmic systems in healthcare settings.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":null,"pages":null},"PeriodicalIF":2.2,"publicationDate":"2024-03-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.13281","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140330339","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}
BioethicsPub Date : 2024-03-25DOI: 10.1111/bioe.13283
Thomas Grote, Philipp Berens
{"title":"A paradigm shift?—On the ethics of medical large language models","authors":"Thomas Grote, Philipp Berens","doi":"10.1111/bioe.13283","DOIUrl":"10.1111/bioe.13283","url":null,"abstract":"<p>After a wave of breakthroughs in image-based medical diagnostics and risk prediction models, machine learning (ML) has turned into a normal science. However, prominent researchers are claiming that another paradigm shift in medical ML is imminent—due to most recent staggering successes of large language models—from single-purpose applications toward generalist models, driven by natural language. This article investigates the implications of this paradigm shift for the ethical debate. Focusing on issues like trust, transparency, threats of patient autonomy, responsibility issues in the collaboration of clinicians and ML models, fairness, and privacy, it will be argued that the main problems will be continuous with the current debate. However, due to functioning of large language models, the complexity of all these problems increases. In addition, the article discusses some profound challenges for the clinical evaluation of large language models and threats to the reproducibility and replicability of studies about large language models in medicine due to corporate interests.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":null,"pages":null},"PeriodicalIF":2.2,"publicationDate":"2024-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.13283","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140208343","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}