Background Big data and AI applications now play a major role in many health contexts. Much research has already been conducted on ethical and social challenges associated with these technologies. Likewise, there are already some studies that investigate empirically which values and attitudes play a role in connection with their design and implementation. What is still in its infancy, however, is the comparative investigation of the perspectives of different stakeholders. Methods To explore this issue in a multi-faceted manner, we conducted (...) semi-structured interviews as well as focus group discussions with patients and clinicians. These empirical methods were used to gather interviewee’s views on the opportunities and challenges of medical AI and other data-intensive applications. Results Different clinician and patient groups are exposed to medical AI to differing degrees. Interviewees expect and demand that the purposes of data processing accord with patient preferences, and that data are put to effective use to generate social value. One central result is the shared tendency of clinicians and patients to maintain individualistic ascriptions of responsibility for clinical outcomes. Conclusions Medical AI and the proliferation of data with import for health-related inferences shape and partially reconfigure stakeholder expectations of how these technologies relate to the decision-making of human agents. Intuitions about individual responsibility for clinical outcomes could eventually be disrupted by the increasing sophistication of data-intensive and AI-driven clinical tools. Besides individual responsibility, systemic governance will be key to promote alignment with stakeholder expectations in AI-driven and data-intensive health settings. (shrink)

ABSTRACT‘Solidarity’ is a key concept in political movements and usually bears on matters of labour, health and social justice. As such, it is essential in the reproduction and transformation of communities that support their members and protect their interests. It is sometimes overlooked that interspecies solidarity already pertains with a number of domesticated animals, and that people are willing to carry substantial emotional, financial and social burdens to benefit them. There has been even more reluctance to acknowledge wild animals as (...) fellow members of our political communities with whom we might stand in solidarity. The purpose of this paper is to propose that solidaristic relations with certain wild animals are not only possible, but also already exist in some contexts. It explores three different understandings of solidarity, and in probing to what extent they can be applied to wild animals, it identifies some important different roles they can play in ‘animal politics’, and shows how they can help us reconceive our communities in less anthropocentric terms. (shrink)

In "Public Health and Precarity," Michael Doan and Ami Harbin have done important work extending Sherwin's concept of relational autonomy to encompass relational agency—including agents such as communities and states. This opens up new ways of thinking about responsibility for public health in long-standing debates about the role of the state in public health.The case studies Doan and Harbin analyze are also important for thinking of the account of relational solidarity that Sherwin developed together with Baylis and Kenny, one element (...) of relational public health. The discussion may even open the space for a reformulation of relational solidarity. I will use the... (shrink)

This paper argues that data-driven medicine gives rise to a particular normative challenge. Against the backdrop of a distinction between the good and the right, harnessing personal health data towards the development and refinement of data-driven medicine is to be welcomed from the perspective of the good. Enacting solidarity drives progress in research and clinical practice. At the same time, such acts of sharing could—especially considering current developments in big data and artificial intelligence—compromise the right by leading to injustices and (...) affecting concrete modes of individual self-determination. In order to address this potential tension, two key elements for ethical reflection on data-driven medicine are proposed: the controllability of information flows, including technical infrastructures that are conducive towards controllability, and a paradigm shift towards output-orientation in governance and policy. (shrink)

Bioethical work on solidarity has yielded an array of divergent conceptions. But what do these accounts add to normative bioethics? What is solidarity’s distinctive social normative role? Prainsack and Buyx suggest that solidarity be understood as the ‘putty’ of justice. I argue here that the putty metaphor is deeply insightful and—when spelled out in detail—successfully explicates solidarity’s social normative function. Unfortunately, Prainsack and Buyx’s own account cannot play this role. I propose instead that the putty metaphor supports a conception of (...) solidarity as equity. This proposal enables us to answer whether and when we should act in solidarity, and with whom, while also capturing the putty metaphor and hence answering a basic question: what is solidarity for? (shrink)

In The Gift Relationship, Richard Titmuss argued that the practice of altruistic blood donation fosters social solidarity while markets in blood erode it. This paper considers the implications of this line of argument for the organ market debate. I defend Titmuss’ arguments against a number of criticisms and respond to claims that Titmuss’ work is not relevant to the context of live donor organ transplantation. I conclude that Titmuss’ arguments are more resilient than many advocates of organ markets suggest, and (...) more relevant to the debate than is commonly appreciated. (shrink)

Using relations of solidarity in global contexts, this article explores some of the debates about what constitutes solidarity. Three primary forms of solidarity are discussed, with particular attention to the different nature of the solidaristic relations and their moral obligations.

Although the right to health is universal, many nations that honor it fail to do so in the case of non-citizen immigrants. In this essay, we argue that the reasons typically given for not extending the right to health to immigrants are without merit and that there are good reasons for nations to protect, respect and fulfill the health right of all immigrants. Contrary to the standard view, we argue that health can be understood as a global public good. Two (...) important points follow: because health is non-excludable and non-rivalrous, it is in the health interests of nations to respect, protect and fulfill immigrants’ right to health. Furthermore, meeting the health needs of immigrants is an important way for receiving nations to meet the duties that may be generated by the benefits they incur as a result of health’s global public good dimension, thus ensuring that receiving nations are not free riders. We then argue that because citizens and immigrants dwell together, nations have duties of solidarity to immigrants with respect to health. Using the insights of social psychology, we show that solidarity among diverse people is both a reasonable expectation and a morally desirable one. (shrink)

Journal of Social Philosophy, EarlyView.

Community engagement (CE) is gaining prominence in global health research. A number of ethical goals–spanning the instrumental, intrinsic, and transformative–have been ascribed to CE in global health research. This paper draws attention to an additional transformative value that CE is not typically linked to but that seems very relevant: solidarity. Both are concerned with building relationships and connecting parties that are distant from one another. This paper first argues that furthering solidarity should be recognized as another ethical goal for CE (...) in global health research. It contends that, over time, CE can build the bases of solidaristic relationships—moral imagination, recognition, understanding, empathy—between researchers and community members. Applying concepts from existing accounts of solidarity, the paper develops preliminary ideas about who should be engaged and how to advance solidarity. The proposed approach is compared to current CE practice in global health research. Finally, the paper briefly considers how solidaristic CE could affect how global health research is performed. (shrink)

Several Dutch politicians have recently argued that medical voluntary euthanasia laws should be extended to include healthy elderly citizens who suffer from non-medical ‘existential suffering’. In response, some seek to show that cases of medical euthanasia are morally permissible in ways that completed life euthanasia cases are not. I provide a different, societal perspective. I argue against assessing the permissibility of individual euthanasia cases in separation of their societal context and history. An appropriate justification of euthanasia needs to be embedded (...) in a wider solidaristic response to the causes of suffering. By classifying some suffering as ‘medical’ and some as ‘non-medical’, most societies currently respond to medical conditions in importantly different ways than they do to non-medical suffering. In medical cases, countries like the Netherlands have a health care, health research and public health system to systematically assign responsibilities to address causes of medical suffering. We lack such a system for non-medical suffering among elderly citizens, which makes completed life euthanasia importantly different from euthanasia in medical cases. Because of this moral ‘responsibility gap’, focusing on the permissibility of completed life euthanasia in separation of wider societal duties to attend to possible causes is societally inappropriate. To spell out this objection in more philosophical terms, I introduce the concept of acts that are morally permissible but contextually problematic. (shrink)

Luck egalitarianism provides a reason to object to conditionality in health incentive programmes in some cases when conditionality undermines political values such as solidarity or inclusiveness. This is the case with incentive programmes that aim to restrict access to essential healthcare services. Such programmes undermine solidarity. Yet, most people's lives are objectively worse, in one respect, in non-solidary societies, because solidarity contributes both instrumentally and directly to individuals' well-being. Because solidarity is non-excludable, undermining it will deprive both the prudent and (...) the imprudent citizens of its goods. Thereby, undermining solidarity can make prudent citizens worse off than they would have otherwise been, out of no fault or choice of their own, but rather as a result of somebody else's imprudent choice. This goes against the spirit of luck egalitarianism. Therefore (luck egalitarian) justice can require us to save the imprudent and avoid conditionality in access to essential healthcare services. (shrink)

In the coming weeks and months SARS-CoV-2 may ravage countries with weak health systems and populations disproportionately affected by HIV, tuberculosis, and other infectious diseases. Without safeguards and proper attention to global health equity and justice, the effects of this pandemic are likely to exacerbate existing health and socio-economic inequalities. This paper argues that achieving global health equity in the context of COVID-19 will require that notions of reciprocity and relational equity are introduced to the response.

Bioethicists, medical professionals and lawyers who support Posthumous Assisted Reproduction as an ethical procedure in the case of the deceased’s spouse often oppose it in the case of the deceased’s parents. In addition, supporters of PAR usually rely on an individualistic version of liberalism, thus focusing on a personal rather than relational approach to autonomy. This article proposes an alternative and comprehensive theoretical framework for the practice of PAR, based on the concepts of solidarity and relational autonomy. By analyzing empirical (...) data on people’s attitudes towards PAR, we reveal an important distinction between the deceased’s wish and the deceased’s consent. In addition, we show that in the majority of cases individuals report that the well-being of their relatives is paramount once they are dead. This finding, as will be demonstrated in the article, is not fully in line with Tremellen and Savulescu’s position who allow PAR in the case of the deceased’s spouse but not in the case of his parents. We also suggest that a relational autonomy perspective can be used to evaluate the choices and actions of the deceased, and to justify the requests for PAR by his spouse or parents. Furthermore, the discussion leads us to analyze both Sandel’s account of solidarity and the more recent account of Prainsack and Buyx. We conclude that PAR can be considered as a solidarity-based practice, both at the familial and societal level, an aspect that should be given more emphasis in the discourse surrounding PAR. (shrink)

Self-tracking devices point to a future in which individuals will be more involved in the management of their health and will generate data that will benefit clinical decision making and research. They have thus attracted enthusiasm from medical and public health professionals as key players in the move toward participatory and personalized healthcare. Critics, however, have begun to articulate a number of broader societal and ethical concerns regarding self-tracking, foregrounding their disciplining, and disempowering effects. This paper has two aims: first, (...) to analyze some of the key promises and concerns that inform this polarized debate. I argue that far from being solely about health outcomes, this debate is very much about fundamental values that are at stake in the move toward personalized healthcare, namely, the values of autonomy, solidarity, and authenticity. The second aim is to provide a framework within which an alternative approach to self-tracking for health can be developed. I suggest that a practice-based approach, which studies how values are enacted in specific practices, can open the way for a new set of theoretical questions. In the last part of the paper, I sketch out how this can work by describing various enactments of autonomy, solidarity, and authenticity among self-trackers in the Quantified Self community. These examples show that shifting attention to practices can render visible alternative and sometimes unexpected enactments of values. Insofar as these may challenge both the promises and concerns in the debate on self-tracking for health, they can lay the groundwork for new conceptual interventions in future research. (shrink)

The further development of public health ethics will be assisted by a more direct engagement with political theory. In this way, the moral vocabulary of the liberal tradition should be supplemented—but not supplanted—by different conceptual and normative resources available from other traditions of political and social thought. This article discusses four lines of further development that the normative conceptual discourse of public health ethics might take. The relational turn. The implications for public health ethics of the new ‘ecological’ or ‘relational’ (...) interpretation that is emerging for concepts such as agency, self-identity, autonomy, liberty and justice. Governing the health commons. The framework of collective action problems is giving way to notions of democratic governance and management of common resources. The concept of membership. Membership is specified by the notions of equal respect and parity of voice and agency. The concept of mutuality. Mutuality is specified by the notions of interdependent concern and care. (shrink)

We see cases of moral luck arising in recent times, as we face the uncertainties of provisional rules for navigating the coronavirus pandemic. How should we respond to rule-breakers, and how should they view themselves, when they cause harm inadvertently? Although some argue that guilt is unnecessary for any harm that may result from luck, this paper takes moral luck seriously and encourages consideration of the benefits to be achieved by expressions of self-blame amidst troubling circumstances, from pure accidents to (...) how we live during pandemics. It argues that rule-breakers in public health crises show us the importance of taking responsibility for our actions. (shrink)

In this article, I apply the concept of solidarity to collective knowledge practices in healthcare. Generally, solidarity acknowledges that people are dependent on each other in many respects, and it captures those support practices that people engage in out of concern for others in whom they recognise a relevant similarity. Drawing on the rich literature on solidarity in bioethics and beyond, this article specifically discusses the role that epistemic solidarity can play in healthcare. It thus focuses, in particular, on solidarity’s (...) relationship with justice and injustice. In this regard, it is argued (1) that justice and solidarity are two equally important and complementary values that should both be considered in healthcare practices and institutions and (2) that solidarity often arises in unjust situations and can be a means to bring about justice. I transfer these ‘general’ insights about solidarity to knowledge practices in healthcare and link them to the discussion about epistemic injustices in healthcare and how to overcome them. I argue that epistemic solidarity can play an important role in overcoming epistemic injustices as well as—and independently from its contribution to justice—in knowledge production in medicine more generally. To demonstrate how epistemic solidarity can add to our understanding of collective knowledge practices, I discuss two examples: patients sharing their medical data for research purposes and healthcare professionals’ engagement with patients to better understand their afflictions. (shrink)

Endeavors have been made to found and incorporate ethical values in most aspects of healthcare, including health technology assessment. Health technologies and their assessment are value-laden and could trigger problems with dissemination if they contradict societal norms. Per WHO definition, preconception expanded carrier screening is a new health technology that warrants assessment. It is a genetic test offered to couples who have no known risk of recessive genetic diseases and are interested pregnancy. A test may screen for carrier status of (...) several autosomal recessive diseases and X-linked at one go. The technique has been piloted in the Netherlands and is discussed in other countries. The aim of the study was to examine values and value conflicts that healthcare experts recounted in relation to the discussion of implementation and use of preconception ECS in Sweden. We interviewed ten experts, who were associated with influencing health policymaking in Sweden. We employed systematizing expert interviews, which endeavor to access experts’ specialist knowledge. There were four female and six male informants, of which four were physicians, three bioethicists, one a legal expert, one a theologian and one a political party representative in the parliament. The participants functioned as members of two non-governmental bodies and three governmental organizations. We employed thematic analysis to identify themes, categories and subcategories. Two main themes surfaced: values and value conflicts. The main categories of Respect for persons, Solidarity, Human dignity, Do no harm, Health and Love formed the first theme, while values conflicting with autonomy and integrity respectively, constituted the second theme. Concepts relating to respect for persons were the most commonly mentioned among the participants, followed by notions alluding to solidarity. Furthermore, respondents discussed values conflicting with Swedish healthcare ones such as equality and solidarity. The experts highlighted values and concepts that are distinctive of welfare states such as Sweden and delineated how preconception ECS could challenge such values. Moreover, the analysis revealed that certain values were deemed more substantive than others, judging by the extent and detail of inference; for example, respect for persons and solidarity were on top of the list. (shrink)

We argue that an unqualified use of the term solidarity in public health is not only equivocal but problematic toward the ends of public health. The term may be deployed normatively by public health advocates to strengthen the bonds among public health practitioners and refer to an ideal society in which the importance of interdependence among members ought to be acknowledged throughout the polity. We propose an important distinction between partisan solidarity and societal solidarity. Because any moralized belief in a (...) vision of a broad societal solidarity will be a contested political ideal, political reality would limit solidarity based on such a vision to partisan solidarity. An idealized vision of societal solidarity is simply not politically feasible in pluralistic, liberal, democratic societies. However, although societal solidarity is unlikely with respect to any particular policy, it might be hoped for with respect to constitutional procedures that provide boundaries for the agon of the political process. We suggest that moralizing assertions of a solidaristic ideal in a pluralistic society might be counterproductive to generating the political support necessary for public health per se and establishing legitimate public health policy. A pragmatic political approach would be for public health advocates to generate sufficient strong political support for those public health policies that are most amenable to the political and social realities of a time and place. (shrink)

Funding broadly connotes the notion of an institution and/or institutions making money and other resources available to individual researchers and organizations to accomplish specific projects. Whi...

The right not to know is a contested matter. This can be because the inversion of the normal framing of entitlement to information about one's own health is thought to be illogical and inconsistent with self-authorship and/or because the very idea of claiming a right not to know information is an inappropriate appeal to the discourse of rights that places impossible responsibilities on others. Notwithstanding, there has been a sustained increase in this kind of appeal in recent years fueled in (...) large part by the rise and rise of the importance of personal autonomy in health care ethics, and by domestic and international health law. The right not to know has been acknowledged in at least two important international legal instruments. For example, the UNESCO Universal Declaration on the Human Genome and Human Rights, Article 5c provides: “The right of every individual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected.”. (shrink)

In this article, we present an ethics framework for health practice in humanitarian and development work: the ethics of engaged presence. The ethics of engaged presence framework aims to articulate in a systematic fashion approaches and orientations that support the engagement of expatriate health care professionals in ways that align with diverse obligations and responsibilities, and promote respectful and effective action and relationships. Drawn from a range of sources, the framework provides a vocabulary and narrative structure for examining the moral (...) dimensions of providing development or humanitarian health assistance to individuals and communities, and working with and alongside local and international actors. The elements also help minimize or avoid certain miscalculations and harms. Emphasis is placed on the shared humanity of those who provide and those who receive assistance, acknowledgement of limits and risks related to the contributions of expatriate health care professionals, and the importance of providing skillful and relevant assistance. These elements articulate a moral posture for expatriate health care professionals that contributes to orienting the practice of clinicians in ways that reflect respect, humility, and solidarity. Health care professionals whose understanding and actions are consistent with the ethics of engaged presence will be oriented toward introspection and reflective practice and toward developing, sustaining and promoting collaborative partnerships. (shrink)

Digital contact tracing is used in different countries to help contain the COVID-19 pandemic. It raises challenging empirical and ethical questions due to its complexity and widespread effects calling for a broader approach in ethical evaluation. However, existing approaches often fail to include all relevant value perspectives or lack reference to empirical data on the artifact in question. In this paper, we describe the development of an interdisciplinary framework to analyze digital contact tracing from an empirical and ethical perspective. Starting (...) with an analysis of methodological tensions in the attempt to analyze digital contact tracing, we, firstly, set out three methodological premises regarding (a) a specific view of technology, (b) a fruitful normative perspective, and (c) ways to gather empirical knowledge about the object under investigation. Secondly, we inspect consequences of these premises to develop our research methodology. In doing so, we argue for a postphenomenological perspective on technology, solidarity as an important concept to guide the ethical perspective, and an empirical approach based on qualitative social science research and the concept of affordances. We illustrate these considerations by referring to our analysis of the German Corona-Warn-App as an instance of contact tracing based on the Exposure Notification Framework by Google and Apple. We then discuss the implications of using such a framework, including considerations concerning future developments of technologies similar to or inspired by the current concepts of contact tracing. (shrink)

In this article, we present an ethics framework for health practice in humanitarian and development work: the ethics of engaged presence. The ethics of engaged presence framework aims to articulate in a systematic fashion approaches and orientations that support the engagement of expatriate health care professionals in ways that align with diverse obligations and responsibilities, and promote respectful and effective action and relationships. Drawn from a range of sources, the framework provides a vocabulary and narrative structure for examining the moral (...) dimensions of providing development or humanitarian health assistance to individuals and communities, and working with and alongside local and international actors. The elements also help minimize or avoid certain miscalculations and harms. Emphasis is placed on the shared humanity of those who provide and those who receive assistance, acknowledgement of limits and risks related to the contributions of expatriate health care professionals, and the importance of providing skillful and relevant assistance. These elements articulate a moral posture for expatriate health care professionals that contributes to orienting the practice of clinicians in ways that reflect respect, humility, and solidarity. Health care professionals whose understanding and actions are consistent with the ethics of engaged presence will be oriented toward introspection and reflective practice and toward developing, sustaining and promoting collaborative partnerships. (shrink)

The principle of respect for autonomy in clinical ethics is frequently linked to bioethics’ neglect of community-level ethical considerations. I argue that the latter is not an inevitable consequence of the former; rather, that neglect results from a common interpretation of respect for autonomy in solely synchronic and individual terms. A relational understanding of autonomy reveals the way in which respect inescapably involves diachronic and social dimensions. When these are acknowledged, the association between respect for autonomy and liberal individualism is (...) weakened. Such respect has more in common with communitarian approaches, and it need not conflict with the incorporation of collective-level values into ethical deliberation. (shrink)

Transnational reproductive travel is symptomatic of insufficient supplies of reproductive resources, including donor gametes and gestational surrogacy services, and inequities in access to these within domestic health-care jurisdictions. Here, we argue that an innovative approach to domestic policy making using the framework of the National Self-Sufficiency paradigm represents the best solution to domestic challenges and the ethical hazards of the global marketplace in reproductive resources.

Hope takes on a particularly important role in end of life situations. Sustaining hope can have considerable benefits for the quality of life and any prospect of a good death for the dying. However, it has proved difficult to adequately account for hope when dying, particularly in some of the more extreme end of life situations. Standard secular accounts of hope struggle to establish how the fostering of hope may be possible in such situations. This leads to a practical ethical (...) dilemma for those caring for the dying, the ‘paradox of hope’, whereby one can either help maintain the welfare of the dying by generating a misleading ‘false hope’ or maintain truthfulness and concede that hope is not possible. These two problems combine to leave individuals the prospect of dying in terrible circumstances facing only despair. To address this, I argue that we should look beyond standard intentional or dispositional accounts of hope in such cases and treat hope as a cluster concept. Rather than appeal to a unitary conception, what we precisely mean by ‘hope’ may therefore vary depending on the context of use. I outline an account of hope based on Marcel’s account of ‘absolute’ hope but offering an alternative, secular foundation based on solidarity that can explain how hope when dying in extreme circumstances is possible. Hence, where the more familiar accounts break-down in these circumstances, ‘hope talk’ may still be possible if it is seen as relying on this conception of hope. (shrink)

For much of the 20th century, vulnerability to deprivations of health has often been defined by geographical and economic factors. Those in wealthy, usually ‘Northern’ and ‘Western’, parts of the world have benefited from infrastructures, and accidents of geography and climate, which insulate them from many serious threats to health. Conversely, poorer people are typically exposed to more threats to health, and have lesser access to the infrastructures needed to safeguard them against the worst consequences of such exposure. However, in (...) recent years the increasingly globalized nature of the world’s economy, society and culture, combined with anthropogenic climate change and the evolution of antibiotic resistance, has begun to shift the boundaries that previously defined the categories of person threatened by many exogenous threats to health. In doing so, these factors expose both new and forgotten similarities between persons, and highlight the need for global cooperative responses to the existential threats posed by climate change and the evolution of antimicrobial resistance. In this article, we argue that these emerging health threats, in demonstrating the similarities that exist between even distant persons, provides a catalyst for global solidarity, which justifies, and provides motivation for, the establishment of solidaristic, cooperative global health infrastructures. (shrink)

A recent trend in bioethics has highlighted the decisive role that solidarity plays in global health. However, given the impact and extent of the effects of climate change, which reach beyond present generations, it is important to consider whether this concept can be applied intergenerationally. Does it make sense to talk about solidarity with future generations? The objective of this article is to explore ‘amplified solidarity’, a new concept of solidarity that explains our obligations towards the health and quality of (...) life of future generations. The analysis of this concept is structured as follows: I first establish the moral relevance of future people and then investigate the traits of amplified solidarity, its challenges, and its relationship with other key principles. I propose that amplified solidarity needs both a critical imagination to be projected towards the future and an institutional framework to correct health injustices across an intergenerational timescale. Solidarity forms a potent triangular constellation with responsibility and justice to fight against global and intergenerational injustices. (shrink)

This article examines how incidents are governed in a Belgian Nuclear Research Center by way of an incident reporting system named Retour d’Experiences. Drawing on a documentary analysis of incident reports, interviews, and focus groups with personnel, it illustrates how REX enacts a safety governmentality centered on identifying incident causes and culprits. As this governmentality mode obscures the epistemic and political character of incidents, it closes down important opportunities for collective learning about safety and safety governance. It is argued that (...) joint reflection about incidents and resistances toward incident reporting serve as fruitful starting points for a more reflexive safety governance that makes explicit how decisions are made in high-risk contexts. Social scientists can enhance governance of this kind by pointing to different perceptions and evaluations of incidents and by insisting that contending interpretations are confronted and accounted for. (shrink)

Public health involves the use of power to change institutions and redistribute resources and deliberately to shape individual thought and behavior. This requires normative legitimation and demands ethical critique. This article explores concepts that are vital to public health ethics, but have been relatively neglected. These are membership, solidarity and the concept of place. The article argues that the practice of public health should recognize the equal rights of membership in communities of health justice. Public health should also rely on (...) a sense of obligation and mutual aid in a world of shared vulnerability and reciprocal recognition. Finally, public health achieves its goals not merely—and perhaps not most fundamentally—through information and altering the logical ratiocination of individuals or groups, but rather through the reformation of sense and sensibility. (shrink)

The development of new effective but expensive medical treatments leads to discussions about whether and how such treatments should be funded in solidarity-based healthcare systems. Solidarity is often seen as an elusive concept; it appears to be used to refer to different sets of concerns, and its interrelations with the concept of justice are not well understood. This paper provides a conceptual analysis of the concept of solidarity as it is used in discussions on the allocation of healthcare resources and (...) the funding of expensive treatments. It contributes to the clarification of the concept of solidarity by identifying in the literature and discussing four uses of the concept: (1) assisting patients in need, (2) upholding the solidarity-based healthcare system, (3) willingness to contribute and (4) promoting equality. It distinguishes normative and descriptive uses of the concept and outlines the overlap and differences between solidarity and justice. Our analysis shows that the various uses of the concept of solidarity point to different, even conflicting, ethical stances on whether and how access to effective, expensive treatments should be provided. We conclude that the concept of solidarity has a role to play in discussions on the accessibility and funding of newly approved medical treatments. It requires, for instance, that healthcare policies promote and maintain both societal willingness to contribute to the care of others and the value of providing care to vulnerable patients through public funding. (shrink)

Participation in research is supposed to be voluntary and informed. Yet it is difficult to ensure people are adequately informed about the potential uses of their biological materials when they donate samples for future research. We propose a novel consent framework which we call “demonstrated consent” that leverages blockchain technology and generative AI to address this problem. In a demonstrated consent model, each donated sample is associated with a unique non-fungible token (NFT) on a blockchain, which records in its metadata (...) information about the planned and past uses of the sample in research, and is updated with each use of the sample. This information is accessible to a large language model (LLM) customized to present this information in an understandable and interactive manner. Thus, our model uses blockchain and generative AI technologies to track, make available, and explain information regarding planned and past uses of donated samples. (shrink)

Throughout the COVID-19 pandemic, the concept of solidarity has been invoked frequently. Much interest has centred around how citizens and communities support one another during times of uncertainty. Yet, empirical research which accounts and understands citizen’s views on pandemic solidarity, or their actual practices has remained limited. Drawing upon the analysis of data from 35 qualitative interviews, this article investigates how residents in England and Scotland enacted, understood, or criticised (the lack of) solidarity during the first national lockdown in the (...) United Kingdom in April 2020—at a time when media celebrated solidarity as being at an all-time high. It finds that although solidarity was practiced by some people, the perceived lack of solidarity was just as pronounced. We conclude that despite frequent mobilisations of solidarity by policy makers and other public actors, actual practices of solidarity are poorly understood—despite the importance of solidarity for public health and policy. (shrink)

Over one-third of older adults in many countries have a companion animal, and pets may harbor health-promoting potential. Few studies have considered pet-ownership in relation to economic vulnerability, and pet-ownership has not been often considered within policy efforts to promote ageing-in-place. We conducted a mixed methods case study to understand perspectives of both community agencies that support ageing-in-place and older adults themselves. A shortage of affordable, appropriate pet-friendly housing emerged as a challenge, even when framed as a legitimate choice and (...) preference for many older adults. In this manuscript, we share the trajectories of three economically vulnerable older adults whose affordable housing needs became entangled with commitments to pets. Guided by dialogical narrative methodology, we offer each narrative as a short vignette to illustrate the extent to which older adults will practice ‘more-than-human solidarity’ for a pet, even when their own well-being is compromised as a result; and highlight incongruence between the underlying moral values that shape solidaristic practices of individuals versus solidaristic arrangements that shape affordable housing opportunities. We suggest that housing rules and legislation that disrupt, rather than confirm, more-than-human solidarity may render older adults susceptible to, rather than protected from, deteriorating physical, mental and social well-being. We propose that collective solidaristic practices must reflect and subsume the moral complexity of solidarity practiced by individuals, to enable fair and equitable ageing-in-place. (shrink)

With the increasing prices of newly approved anti-cancer treatments contributing to rising healthcare costs, healthcare systems are facing complex economic and ethical dilemmas. Especially in countries with universal access and mandatory health insurance, including many European countries, the organizing of funding or reimbursement of expensive new treatments can be challenging. When expensive anti-cancer treatments are deemed safe and effective, but are not (yet) reimbursed, ethical dilemmas arise. In countries with universal healthcare systems, such as the Netherlands, this gives rise to (...) a rather new ethical dilemma: should patients be allowed to pay out of pocket, using private funds, for medical treatments? On the one hand, to allow patients to pay for treatments out of pocket would be in line with the medical-ethical principles of beneficence and autonomy. On the other hand, allowing patients to pay out of pocket for anti-cancer treatments may lead to unequal access to medical treatments and could be considered unfair to patients who are less well-off. Thus, it could undermine the values of equality and solidarity, on which the Dutch healthcare system is built. Furthermore, out-of-pocket payments could potentially lead to financial hardship and distress for patients, which would conflict with the principle of non-maleficence. Does this mean that patients can rightfully be denied access to approved but not (yet) reimbursed anti-cancer treatments? In this article, we will use the Dutch healthcare system, which is based on equal access and solidarity, as a case study to draw attention to this—currently relatively unknown and unresolved—dilemma and to clarify the values at stake. This article contributes to current discussions about the societal problem of rising healthcare costs by informing policymakers, healthcare professionals, and ethicists about the ethical dilemma of out-of-pocket payments in universal healthcare systems, and aims to support health authorities, policymakers and health professionals in developing policy for whether to allow out-of-pocket payment-based access to newly approved but (too) expensive anti-cancer treatments. (shrink)