BackgroundHumanitarian crises and emergencies, events often marked by high mortality, have until recently excluded palliative care—a specialty focusing on supporting people with serious or terminal illness or those nearing death. In the COVID-19 pandemic, palliative care has received unprecedented levels of societal attention. Unfortunately, this has not been enough to prevent patients dying alone, relatives not being able to say goodbye and palliative care being used instead of intensive care due to resource limitations. Yet global guidance was available. In 2018, (...) the WHO released a guide on‘Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises’—the first guidance on the topic by an international body.AimsThis paper argues that while a landmark document, the WHO guide took a narrowly clinical bioethics perspective and missed crucial moral dilemmas. We argue for adding a population-level bioethics lens, which draws forth complex moral dilemmas arising from the fact that groups having differential innate and acquired resources in the context of social and historical determinants of health. We discuss dilemmas concerning: limitations of material and human resources; patient prioritisation; euthanasia; and legacy inequalities, discrimination and power imbalances.ImplicationsIn parts of the world where opportunity for preparation still exists, and as countries emerge from COVID-19, planners must consider care for the dying. Immediate steps to support better resolutions to ethical dilemmas of the provision of palliative care in humanitarian and emergency contexts will require honest debate; concerted research effort; and international, national and local ethical guidance. (shrink)

In the first of a trilogy of articles published in the New England Journal of Medicine in May 2015, physician–journalist Lisa Rosenbaum observes that the crucial question regarding conflicts of interest between physicians and commercial industry is the extent to which interactions between the two are “beneficial or harmful to patients?”. She goes on to note that the answer to this question “depends on how you define harm,”1 and argues that many of the claims of harm flowing from COI are (...) incomplete, insufficient, or are based on “suggestive extrapolations from data”. If there are benefits to be gained from physician–industry relationships, and if the evidence... (shrink)

Recently, significant research effort has focused on using Twitter to investigate mental health at the population-level. While there has been influential work in developing ethical guidelines for Internet discussion forum-based research in public health, there is currently limited work focused on addressing ethical problems in Twitter-based public health research, and less still that considers these issues from users’ own perspectives. In this work, we aim to investigate public attitudes towards utilizing public domain Twitter data for population-level (...) mental health monitoring using a qualitative methodology. The study explores user perspectives in a series of five, 2-h focus group interviews. Following a semi-structured protocol, 26 Twitter users with and without a diagnosed history of depression discussed general Twitter use, along with privacy expectations, and ethical issues in using social media for health monitoring, with a particular focus on mental health monitoring. Transcripts were then transcribed, redacted, and coded using a constant comparative approach. While participants expressed a wide range of opinions, there was an overall trend towards a relatively positive view of using public domain Twitter data as a resource for population level mental health monitoring, provided that results are appropriately aggregated. Results are divided into five sections: a profile of respondents’ Twitter use patterns and use variability; users’ privacy expectations, including expectations regarding data reach and permanence; attitudes towards social media based population-level health monitoring in general, and attitudes towards mental health monitoring in particular; attitudes towards individual versus population-level health monitoring; and users’ own recommendations for the appropriate regulation of population-level mental health monitoring. Focus group data reveal a wide range of attitudes towards the use of public-domain social media “big data” in population health research, from enthusiasm, through acceptance, to opposition. Study results highlight new perspectives in the discussion of ethical use of public data, particularly with respect to consent, privacy, and oversight. (shrink)

Dive et al. argue to limit the scope, scale, and quantity of results in genomic screening programs at the population level. Their analysis offers two interrelated reasons for this recommendation: f...

This article adopts a population-level bioethics approach to analyzing the ethical implications of novel deep-brain stimulation (DBS) technologies. I claim that a microlevel focus on costs and benefits is necessary but insufficient to address the concerns of social justice and health equity that attend the potential utilization of DBS technologies. A macrosocial, population-based analysis notes two ethically significant trends regarding novel health technologies: (1) that they are the prime mover of hyperinflationary health cost trajectories, and (2) (...) that even where they improve overall population health such technologies may expand health inequalities. Such an expansion could exacerbate what Powers and Faden have identified as “densely-woven patterns of disadvantage,” and therein could contravene mandates of social justice. Such concerns of justice and equity are sharpened by the fact that those populations that bear the highest risk of suffering the injuries and illnesses for which DBS technologies might be warranted are among the most disadvantaged groups in American society. Accordingly, ethical analysis of DBS technologies must include an assessment of the evidence suggesting that in their capacity to improve health and compress health inequalities, whole-population approaches that address the upstream factors that shape distributions of neuropsychiatric injuries and illness may be preferable to acute health interventions. However, the article warns against the false-choice fallacy, and notes that whole-population policies and acute care interventions can be simultaneously endorsed. The article concludes by suggesting that the ethical issue of relative priority between these approaches is best framed via a population-level analysis. (shrink)

Bioethics in the twenty‐first century is confronting what one might call “collective‐impact problems.” The ethics guidance and policies that are developed to address these kinds of problems will affect not only individuals but everyone living and future generations too. With many collective‐impact problems, all parties will eventually be worse off if there is a failure to develop solutions to head off damage to the shared environment. However, the effects are not felt equally throughout and across societies; some groups are (...) hit far worse. To address collective‐impact problems, bioethics needs to recalibrate. Our field, and especially American bioethics, should find a better balance between individual rights and the best interests of the group, develop more robust tools for examining structural inequities that damage people's health and well‐being, and study how to engage the public in learning about and shaping ethics guidance for these complex problems. (shrink)

[OPEN ACCESS] Commentaries on the ethics of Covid lockdowns nearly all focus on offering substantive guidance to policy‐makers. Lockdowns, however, raise many ethical questions that admit of a range of reasonable answers. In such cases, policy‐making in a liberal democracy ought to be sensitive to which reasonable views the public actually holds—a topic existing bioethical work on lockdowns has not explored in detail. In this essay, I identify several important questions connected to the kind of influence the public ought to (...) have on lockdown decision‐making, including how policy‐makers ought to handle misinformed or morally suspect viewpoints, and how policy‐makers ought to respond to minority viewpoints. I argue that questions like this, concerning the appropriate influence of the public on decision‐making, will be central to the field of bioethics as it increasingly focuses on policy and population‐level issues and therefore ought to be priorities for future work. (shrink)

This chapter contains sections titled: The Malthusian Warning “Population Control” and its Critics “Leveling Off”: The Demographic Transition The Ethics of Population Programs Optimal Population Size: Fewer with More, or More with Less? A Thought‐Experiment About a Solution to the Population Problem References.

Death is something we mourn or fear as the worst thing that could happen―whether the deaths of close ones, the deaths of strangers in reported accidents or tragedies, or our own. And yet, being dead is something that no one can experience and live to describe. This simple truth raises a host of difficult philosophical questions about the negativity surrounding our sense of death, and how and for whom exactly it is harmful. The question of whether death is bad has (...) occupied philosophers for centuries, and the debate emerging in philosophical literature is referred to as the "badness of death." Are deaths primarily negative for the survivors, or does death also affect the deceased? What are the differences between death in fetal life, just after birth, or in adolescence? In order to properly evaluate deaths in global health, we must find answers to these questions. -/- In this volume, leading philosophers, medical doctors, and economists discuss different views on how to evaluate death and its relevance for health policy. This includes theories about the harm of death and its connections to population-level bioethics. For example, one of the standard views in global health is that newborn deaths are among the worst types of death, yet stillbirths are neglected. This raises difficult questions about why birth is so significant, and several of the book's authors challenge this standard view. -/- This is the first volume to connect philosophical discussions on the harm of death with discussions on population health, adjusting the ways in which death is evaluated. Changing these evaluations has consequences for how we prioritize different health programs that affect individuals at different ages, as well as how we understand inequality in health. (shrink)

First, to what level of quality can medical ethics a spire, if it ignores callous discrimination in medrcal practice against large populations of the innocent poor? Second, how effective can such theories be in addressing the critical issues of medical and clinical ethics if they are unable to contribute to the closing of the gap of sociomedical disparity?Marcio Fabri dos Anjos, Medical Ethics in the Developing World: A Liberation Theology Perspective.

BackgroundAdvance directives (ADs) were implemented in Portugal in 2012. Although more than a decade has passed since Law 25/2012 came into force, Portuguese people have very low levels of adherence. In this context, this study aimed to identify and analyse the attitudes of people aged 18 or older living in Portugal towards ADs and to determine the relationships between sociodemographic variables (gender/marital status/religion/level of education/residence/whether they were a health professional/whether they had already drawn up a living will) and people’s (...) attitudes towards ADs.MethodsAn online cross-sectional analytical study was conducted using a convenience sample. For this purpose, a request (email) that publicized the link to a –form—which included sociodemographic data and the General Public Attitudes Toward Advance Care Directives (GPATACD) scale—was sent to 28 higher education institutions and 30 senior universities, covering all of mainland Portugal and the islands (Azores and Madeira). The data were collected between January and February 2023.ResultsA total of 950 adults from completed the online form. The lower scores (mean 1 and 2) obtained in most responses by applying the GPATACD scale show that the sample of the Portuguese population has a very positive attitude towards ADs. The data showed that women, agnostics/atheists, health professionals and those who had already made a living will had more positive attitudes (p < 0.001) towards ADs. There were no statistically significant differences in the attitudes of the Portuguese population sample towards ADs in relation to marital status, education level, and residence.ConclusionThe results obtained enable us to confirm that this sample of the Portuguese population has a positive attitude towards ADs. We verify that there are certain fringes of this sample with certain sociodemographic characteristics (women, agnostics/atheists, health professionals and those who had already made a living will) that have a more positive attitude towards ADs. This data could facilitate the implementation and adjustment of relevant measures, particularly in the field of health education and aimed at groups with less favourable attitudes, to increase the effectiveness of voluntary exercise of citizens’ autonomy in end-of-life care planning. (shrink)

Individual research protections provided by bioethical principles can be extended to group protections, particularly for place-based communities and cultural groups who may share a common harm or burden. In this article, an argument is made for the need to consider the group conditions of individual research subjects in the ethics of individual report-backs of human biomonitoring results. Human biomonitoring, the measuring of concentration of chemicals or their metabolites in blood, urine, breast milk, hair, and other biological samples, can provide an (...) assessment of an individual's exposure to a chemical and can integrate exposures from multiple pathways and sources. Biomonitoring studies have been increasing in the past decade for such purposes as measuring the levels of chemicals that are ingested by members of the general population and at what concentrations, to determine if exposure levels are higher in some groups vs. others, to track temporal trends to establish reference ranges for chemical exposures, and to investigate an association with health. (shrink)

During the past decade, screening tests using computed tomography have disseminated into practice and been marketed to patients despite neither conclusive evidence nor professional agreement about their efficacy and cost-effectiveness at the population level. This phenomenon raises questions about physicians' professional roles and responsibilities within the setting of medical innovation, as well as the appropriate scope of patient autonomy and access to unproven screening technology. This article explores how physicians ought to respond when new screening examinations that lack (...) conclusive evidence of overall population benefit emerge in the marketplace and are requested by individual patients. To this end, the article considers the nature of evidence and how it influences decision-making for screening at both the public policy and individual patient levels. We distinguish medical and ethical differences between screening recommended for a population and screening considered on an individual patient basis. Finally, we discuss specific cases to explore how evidence, patient risk factors and preferences, and physician judgment ought to balance when making individual patient screening decisions. (shrink)

Epigenetics – the study of mechanisms that influence and modify gene expression – is providing unique insights into how an individual’s social and physical environment impact the body at a molecular level, particularly in populations that experience stigmatization and trauma. Researchers are employing epigenetic studies to illuminate how epigenetic modifications lead to imbalances in health outcomes for vulnerable populations. However, the investigation of factors that render a population epigenetically vulnerable present particular ethical and methodological challenges. Here we are (...) concerned with demonstrating how, in targeting certain populations for epigenetic research, this research may be pathologizing socio-cultural and medical practices in those populations in a way that increases their vulnerability. Using a case study approach, this article examines three vulnerable populations currently of interest to epigenetic researchers – Indigenous, autistic, and transgender populations – in order to highlight some of the challenges of conducting non-stigmatizing research in epigenetics. (shrink)

A rich literature in public health has demonstrated that health is strongly influenced by a host of environmental factors that can vary according to social, economic, geographic, cultural or physical contexts. Bioethicists should, we argue, recognize this and – where appropriate – work to integrate environmental concerns into their field of study and their ethical deliberations. In this article, we present an argument grounded in scientific research at the molecular level that will be familiar to – and so hopefully (...) more persuasive for – the biomedically-inclined in the bioethics community. Specifically, we argue that the relatively new field of molecular epigenetics provides novel information that should serve as additional justification for expanding the scope of bioethics to include environmental and public health concerns. We begin by presenting two distinct visions of bioethics: the individualistic and rights-oriented and the communitarian and responsibility-oriented. We follow with a description of biochemical characteristics distinguishing epigenetics from genetics, in order to emphasize the very close relationship that exists between the environment and gene expression. This then leads to a discussion of the importance of the environment in determining individual and population health, which, we argue, should shift bioethics towards a Potterian view that promotes a communitarian-based sense of responsibility for the environment, in order to fully account for justice considerations and improve public health. (shrink)

New advances in genomics changed the research landscape significantly in the last few years. The power and significance of already existing tissue collections is enhanced by their growing size, and all over the world national projects aim to connect with each other at the international level, calling for integrated and common regulations in the transnational research field. The post genomics era faces problems that are partially different from those within the classical bioethical framework. The challenge is to find new (...) ways to deal with regulations in order to facilitate research without frustrating personal rights. Informed Consent has been the center of this wide debate. We propose a model for rethinking consent in an open-time/open-goal framework suitable to genomics research. Consensus becomes more than a single legal step and goes more in the direction of a participated governance mechanism, a circular open process of communication which the IC sheet signature is just one instance of. This approach provides a governance framework based on different levels of consensus and participation that already contains mechanisms to resolve conflicts between different instances and to protect both the interest of research and the rights of participants. (shrink)

In this article, I argue that as a theoretical matter, a population's health-level is best quantified via averagism. Averagism asserts that the health of a population is the average of members’ health-levels. This model is better because it does not fall prey to a number of objections, including the repugnant conclusion, and because it is not arbitrary. I also argue that as a practical matter, population health-levels are best quantified via totalism. Totalism asserts that the health (...) of a population is the sum of members’ health-levels. Totalism is better here because it fits better with cost-benefit analysis and such an analysis is the best practical way to value healthcare outcomes. The two results are compatible because the theoretical and practical need not always align, whether in general or in the context of population health. (shrink)

Background HIV prevention trials conducted among disadvantaged vulnerable at-risk populations in developing countries present unique ethical dilemmas. A key concern in bioethics is the validity of informed consent for trial participation obtained from research subjects in such settings. The purpose of this study was to investigate the effectiveness of a continuous informed consent process adopted during the MDP301 phase III vaginal microbicide trial in Mwanza, Tanzania. Methods A total of 1146 women at increased risk of HIV acquisition working as (...) alcohol and food vendors or in bars, restaurants, hotels and guesthouses have been recruited into the MDP301 phase III efficacy and safety trial in Mwanza. During preparations for the trial, participatory community research methods were used to develop a locally-appropriate pictorial flipchart in order to convey key messages about the trial to potential participants. Pre-recorded audio tapes were also developed to facilitate understanding and compliance with gel-use instructions. A comprehension checklist is administered by clinical staff to all participants at screening, enrolment, 12, 24, 40 and 50 week follow-up visits during the trial. To investigate women's perceptions and experiences of the trial, including how well participants internalize and retain key messages provided through a continuous informed consent process, a random sub-sample of 102 women were invited to participate in in-depth interviews conducted immediately after their 4, 24 and 52 week follow-up visits. Results 99 women completed interviews at 4-weeks, 83 at 24-weeks, and 74 at 52 weeks. In all interviews there was evidence of good comprehension and retention of key trial messages including that the gel is not currently know to be effective against HIV; that this is the key reason for conducting the trial; and that women should stop using gel in the event of pregnancy. Conclusions Providing information to trial participants in a focussed, locally-appropriate manner, using methods developed in consultation with the community, and within a continuous informed-consent framework resulted in high levels of comprehension and message retention in this setting. This approach may represent a model for researchers conducting HIV prevention trials among other vulnerable populations in resource-poor settings. Trial registration Current Controlled Trials ISRCTN64716212. (shrink)

This study aims to assess the level and determinants of the general public's willingness to organ donation. We conducted a population-based cross-sectional study of 4261 participants in China. The primary outcome was the willingness to donate organs. Logistic regression modelling was used to determine the factors that affect willingness to donate organs. Overall, the proportion of participants who showed a willingness to donate organs was 47.45% (95%CI: 0.46, 0.49) in this study. Logistic regression modelling showed participants from Western (...) (OR = 1.33, 95%CI = 1.11-1.59) and Eastern China (OR = 1.40, 95%CI = 1.19-1.65) were more willing to donate organs compared with those from Central China. The odds of being willing to donate organs was higher in females than males (OR = 1.35, 95%CI = 1.17-1.55); and was higher in those participants with experience of organ donation (OR = 1.58, 95%CI = 1.13-2.21), experience of caring for organ transplant patients (OR = 1.45, 95%CI = 1.01-2.07), and those undertaking related voluntary activities (OR = 1.67, 95%CI = 1.45-1.94), than those without. The general public's level of willingness to organ donation was not high in this study. Geographical region, gender, experience of organ donation related activities, taking care of organ transplant patients and volunteering in related activities were independently associated with participants' willingness to donate organs. (shrink)

This study aims to assess the level and determinants of the general public's willingness to organ donation. We conducted a population-based cross-sectional study of 4261 participants in China. The primary outcome was the willingness to donate organs. Logistic regression modelling was used to determine the factors that affect willingness to donate organs. Overall, the proportion of participants who showed a willingness to donate organs was 47.45% (95%CI: 0.46, 0.49) in this study. Logistic regression modelling showed participants from Western (...) (OR = 1.33, 95%CI = 1.11-1.59) and Eastern China (OR = 1.40, 95%CI = 1.19-1.65) were more willing to donate organs compared with those from Central China. The odds of being willing to donate organs was higher in females than males (OR = 1.35, 95%CI = 1.17-1.55); and was higher in those participants with experience of organ donation (OR = 1.58, 95%CI = 1.13-2.21), experience of caring for organ transplant patients (OR = 1.45, 95%CI = 1.01-2.07), and those undertaking related voluntary activities (OR = 1.67, 95%CI = 1.45-1.94), than those without. The general public's level of willingness to organ donation was not high in this study. Geographical region, gender, experience of organ donation related activities, taking care of organ transplant patients and volunteering in related activities were independently associated with participants' willingness to donate organs. (shrink)

This study aims to assess the level and determinants of the general public's willingness to organ donation. We conducted a population-based cross-sectional study of 4261 participants in China. The primary outcome was the willingness to donate organs. Logistic regression modelling was used to determine the factors that affect willingness to donate organs. Overall, the proportion of participants who showed a willingness to donate organs was 47.45% (95%CI: 0.46, 0.49) in this study. Logistic regression modelling showed participants from Western (...) (OR = 1.33, 95%CI = 1.11-1.59) and Eastern China (OR = 1.40, 95%CI = 1.19-1.65) were more willing to donate organs compared with those from Central China. The odds of being willing to donate organs was higher in females than males (OR = 1.35, 95%CI = 1.17-1.55); and was higher in those participants with experience of organ donation (OR = 1.58, 95%CI = 1.13-2.21), experience of caring for organ transplant patients (OR = 1.45, 95%CI = 1.01-2.07), and those undertaking related voluntary activities (OR = 1.67, 95%CI = 1.45-1.94), than those without. The general public's level of willingness to organ donation was not high in this study. Geographical region, gender, experience of organ donation related activities, taking care of organ transplant patients and volunteering in related activities were independently associated with participants' willingness to donate organs. (shrink)

In response to the COVID-19 pandemic, Korean society has sought to vaccinate most of its population. Consequently, the Korean government has attempted to make vaccination compulsory by promoting awareness of its benefits. The administration has pushed for mandatory vaccination by claiming that vaccination is more beneficial than harmful, based on a utilitarian view. However, this view is difficult to justify based on the two levels of utilitarianism presented by R. M. Hare. Compulsory vaccination cannot satisfy the universalizability, nor the (...) satisfaction of preference, and exposes the difficulties of utilitarianism. In addition, mandatory vaccination is difficult to justify based on the perspective of fairness theory, that is, “justice as the fairness” of John Rawls and H. L. A. Hart’s principle of fairness. From the point of view of Hare’s utilitarianism and fairness theory, it has been shown that mandatory vaccination is not easily justified. In reality, the power of the state continues to strengthen, and we should examine this situation from a critical point of view. (shrink)

Background The birth plan is a tool that allows the self-learning and thoughtful analysis of the women during the birthing process, facilitating their making of decisions and participation, in agreement with the bioethical principles of autonomy and no malfeasance. Goal: To understand the perception and satisfaction of women who presented a birth plan. Methodology: Qualitative, descriptive, observational, retrospective and cross-sectional study. The population of the study was composed of 21 women who presented a birth plan regulated in a Hospital (...) ever since the recording of the presentation of the birth plan was started until 2015. Place: Cartagena. Techniques/methods: Semistructured interview. Results-Discussion: Most women considered the plan as a useful self-learning tool on the meaning of the birthing process, as it favored the communication between the expectant mothers/health professionals. Our informants sought information related to the birthing process from informal sources; most perceived a level of respect of their wishes during the process of giving birth. The use of the birth plan did not imply the perception of loss of the degree of control during the birth, although attention to the written document could be improved. Conclusions The use of the birth plan is a very satisfactory and useful experience for their involvement in their self-care, although in some cases, the births did not proceed according to their plans. Nevertheless, the prevalence of the principle of Non-Malfeasance over Autonomy was evidenced. (shrink)

Background The Regional Committee for Africa of the World Health Organization (WHO) in 2001 expressed concern that some health-related studies undertaken in the Region were not subjected to any form of ethics review. In 2003, the study reported in this paper was conducted to determine which Member country did not have a national research ethics committee (REC) with a view to guiding the WHO Regional Office in developing practical strategies for supporting those countries. Methods This is a descriptive study. The (...) questionnaire was prepared and sent by diplomatic pouch to all the 46 Member States in the WHO African Region, through the WHO country representatives, for facilitation and follow up. The data were entered in Excel spreadsheet and subsequently exported to STATA for analysis. A Chi-Squared test (χ 2) for independence was undertaken to test the relationship between presence/absence of Research Ethics Committee (REC) and selected individual socioeconomic and health variables. Results The main findings were as follows: the response rate was 61% (28/46); 64% (18/28) confirmed the existence of RECs; 36% (10/28) of the respondent countries did not have a REC (although 80% of them reported that they had in place an ad hoc ethical review mechanism); 85% (22/26) of the countries that responded to this question indicated that ethical approval of research proposals was, in principle, required; and although 59% of the countries that had a REC expected it to meet every month, only 44% of them reported that the REC actually met on a monthly basis. In the Chi-Squared test, only the average population in the group of countries with a REC was statistically different (at 5% level of significance) from that of the group of countries without a REC. Conclusion In the current era of globalized biomedical research, good ethics stewardship demands that every country, irrespective of its level of economic development, should have in place a functional research ethics review system in order to protect the dignity, integrity and safety of its citizens who participate in research. (shrink)

The goal of this article is to introduce a philosophical analysis of a widely neglected condition which affects between 3% and 18% of the population. People affected by this condition experience a lower level of wellbeing than the average population and are discriminated against in both their professional and their personal life. I will argue that this form of discrimination should be taken more seriously in philosophical debate and that social, legal and medical measures ought to be (...) taken in order to improve the quality of life of people affected by this condition. (shrink)

In recent years there has been increased recognition of the global burden of mental disorders, which in turn has led to the expansion of preventive initiatives at the community and population levels. The application of such public health approaches to mental health raises a number of important ethical questions. The aim of this collection is to address these newly emerging issues, with special attention to the principle of prevention and the distinctive ethical challenges in mental health. The collection brings (...) together an interdisciplinary group of experts in bioethics, mental health, public health, and global health. (shrink)

Budgets of governments and private insurances are limited. Not all drugs and services that appear beneficial to patients or physicians can be covered. Is there a core set of benefits that everyone should be entitled to? If so, how should this set be determined? Are fair decisions just impossible, if we know from the outset than not all needs can be met? While early work in bioethics has focused on clinical issues and a narrow set of principles, in recent (...) years there has been a marked shift towards addressing broader population-level issues, requiring consideration of more demanding theories in philosophy, political science, and economics. At the heart of bioethics' new orientation is the goal of clarity on a complex set of questions in rationing and resource allocation. Rationing and Resource Allocation in Healthcare: Essential Readings provides key excerpts from seminal and pertinent texts and case studies about these topics, contextualized by original introductions. The volume is divided into three broad sections: Conceptual Distinctions and Ethical Theory; Rationing; and Resource Allocation. Containing the most important and classic articles surrounding the theoretical and practical issues related to rationing and how to allocate scare medical resources, this collection aims to assist and inform those who wish to be a part of bioethics' 21st century shift including practitioners and policy-makers, and students and scholars in the health sciences, philosophy, law, and medical ethics. (shrink)

The ethical dimensions of an aging society are larger than the experience of chronic illness, the moral concerns of health care professionals, or the allocation of health care resources. What, then, is the role of bioethics in an aging society, beyond calling attention to these problems? Once we’ve agreed that aging is morally important and that population‐level aging across wealthy nations raises ethical concerns that cannot be fixed through transhumanism or other appeals to transcend aging and mortality (...) through technology, what is our field’s contribution? We argue that it is time for bioethics to turn toward social justice and problems of injustice and that part of doing so is articulating a concept of good citizenship in an aging society that goes beyond health care relationships. (shrink)

In medical research, the ethical principle of respect for persons is operationalized into the process of informed consent. The consent tools should be contextualized and adapted to the different socio-cultural environment, especially when research crosses the traditional boundaries and reaches poor communities. We look at the challenges experienced in the malaria Quinact trial, conducted in the Democratic Republic of Congo, and describe some lessons learned, related to the definition of acceptable representative, the role of independent witness and the impact of (...) socio-economic vulnerability. To ensure children's protection, consent is required by the parents or, in their absence, by a legally mandated representative. In our setting, children's responsibility is often entrusted permanently or temporarily to relatives or friends without a tribunal mandate. Hence, a notion of ‘culturally acceptable representative’ under supervision of the local Ethics Committee may be more suitable. To ensure protection of illiterate subjects, an independent witness is required to confirm that the consent was freely given. However, in low-literacy contexts, potential witnesses often don't have any previous relationship with patient and there may be power-unbalance in their relationship, rather than genuine dialogue. In poor communities, trial participation may be seen as an opportunity to secure access to healthcare. Poverty may also lead to ‘competition’ to access the research-related benefits, with a risk of disturbance at societal or household level. Adjusting consent procedures to sociocultural and socioeconomic realities is essential for fulfilling the underlying ethical principles. This requires a collaborative dialogue between researchers, regulators and ethics committees. (shrink)

Photo ID 72893750 © Rawpixelimages|Dreamstime.com ABSTRACT Solidarity is a concept increasingly employed in bioethics whose application merits further clarity and explanation. Given how vital cooperation and community-level care are to mitigating communicable disease transmission, we use lessons from the COVID-19 pandemic to reveal how solidarity is a useful descriptive and analytical tool for public health scholars, practitioners, and policymakers. Drawing upon an influential framework of solidarity that highlights how solidarity arises from the ground up, we reveal how structural (...) forces can impact the cultivation of solidarity from the top down, particularly through ensuring robust access to important social determinants of health. Public health institutions can support solidarity movements among individuals and communities by adopting a lens of social justice when considering public health priorities and, in turn, promote health equity. INTRODUCTION Over the past two decades, scholars have invoked the concept of solidarity when assessing a wide range of topics in bioethics, from CRISPR-Cas9 technology to organ donation to structural racism.[1] However, the growing literature on solidarity has not fully examined the roles and responsibilities of institutions and governments in fostering solidarity, especially regarding public health measures that implicate entire populations. We argue that it remains unclear how public health institutions should engage with solidarity and how their engagement will affect public health and its ethics. We first take Prainsack and Buyx’ three-tiered framework as an analytical starting point.[2] We then explore how public health institutions can foster solidarity by carefully considering factors that may bolster it on an interpersonal, community, and national scale. We conclude that public health institutions should adopt a lens of social justice to promote solidarity at the interpersonal and community levels, thereby promoting equity in future public health efforts. BACKGROUND Calls for solidarity in bioethics raise longstanding normative questions about the nature and limits of our duties to one another and how to weigh autonomy over considerations of justice.[3] Though the term is diversely applied, Prainsack and Buyx propose a potentially unifying definition in the 2011 Nuffield Council report, “Solidarity: Reflections On An Emerging Concept in Bioethics.” The report defines solidarity as an activity involving “shared practices reflecting a collective commitment to carry financial, social, emotional, and or other ‘costs’ to assist others.” Their conceptualization also includes important features that distinguish solidarity from other values like empathy or altruism: solidarity emphasizes action rather than mere internal feeling and recognition of connection as motivation.[4] Bioethicists have since applied this conceptualization when analyzing issues in public and global health, given that population-level efforts need cooperation from individuals and communities. Prainsack and Buyx further note that solidarity is relevant in bioethics discourses about justice and equity, in support of providing aid to low- and middle-income countries, and as a value exemplified by European welfare states.[5] Other bioethicists have argued that promoting solidarity can contribute to community engagement, partnership with Tribal communities, and global health equity.[6] Most recently, scholars have applied solidarity as a lens to assess the COVID-19 pandemic, highlighting the pitfalls of national mitigation efforts and global disparities in disease outcomes.[7] I. Solidarity at Three Levels It seems impossible to foster solidarity in public health if we cannot identify it in general contexts. Prainsack and Buyx articulate three levels of solidarity: interpersonal solidarity, group solidarity, and legal or contractual codifications of solidarity.[8] They argue that each level inherently informs the one ‘above’ it in a unilateral direction. In other words, solidarity is fundamentally a bottom-up phenomenon. Solidarity among individuals influences group norms, which then have the potential to shape policy and institutional practice.[9] Within the Prainsack and Buyx framework, it would seem nonsensical to posit how solidarity might be expressed vertically or from the “top down.” It appears intuitively odd to imagine how a government entity might ‘be’ in solidarity with a person or group if solidarity requires some cognition about their condition per Prainsack and Buyx’ definition. Some have argued that solidarity does not seem like something that one can impose, as instances of it arise from agents recognizing and acting upon some bond rather than in response to a command. Indeed, people may be rightfully hesitant to engage in solidarity if the official messaging is overly paternalistic or coercive.[10] However, some authors have countered that governments can express solidarity through enacting structural and policy changes, though it is ambiguous how these actions are distinct from a justice-driven approach.[11] If a bottom-up approach is thus the most practical means of achieving policy that reflects solidarity, then it does not add much to public health. Institutions would be ineffective without the population’s initiation of the corresponding social norms. However, we find this conclusion overly pessimistic. Fostering a culture of solidarity to improve public health has potential merit. Prainsack and Buyx’ framework overlooks how public health actors can influence solidarity between individuals and across communities. To clarify, we agree with the view that solidarity is a bottom-up phenomenon. Solidarity may not be able to originate in a top-down fashion, but we suggest that public health institutions can take a more active role in providing the public with accurate information, promoting social justice, and intervening in the social determinants of health. II. The COVID-19 Pandemic as a Case Study Lessons learned from the ongoing COVID-19 pandemic support our argument. The pandemic deepened socioeconomic disparities in the US and hindered access to vital resources such as food, housing, and healthcare.[12] Prainsack recently noted: “[n]ext to the immediate health effects of the virus, poverty and grave inequalities have been the root causes of human suffering during the pandemic.”[13] Prior to the pandemic, many rural and low-income populations lacked reliable access to the internet and devices like laptops or smartphones. This continued lack of access restricts the flow of information and prevents people from accessing telemedicine services.[14] Preexisting social, political, and health inequities worsened health outcomes among many marginalized racial and ethnic groups. It is well-documented that communities of color, including Black, American Indian or Alaska Native, and Latinx populations, had greater COVID-related mortality and morbidity due to the effects of structural racism.[15] Although federal US agencies such as the Centers for Disease Control and Prevention enacted laws that provided safety nets (e.g., the Federal Eviction Moratorium), the majority of such programs have ended, leaving many with little assistance and the threat of further hardship.[16] These disparities are relevant because Prainsack, Buyx, and others note that solidarity arises from agents recognizing and acting on some perceived attainable collective goal(s). Income inequality and disparate access to food, education, and health care may lead people to consider public health goals unattainable. This could limit the desire to work toward those goals collectively.[17] The existing literature on collective action theory supports this intuition. It emphasizes that structural conditions, such as an absence of perceived hope for social change among a group, can lead to low ‘group efficacy’ and little willingness to cooperate, both within and across socioeconomic strata.[18] The pandemic spurred countless messages from public health agencies. The messaging did not recognize or attend to the different material realities and circumstances of the US population. How can people feel comfortable getting vaccinated if they deeply distrust the government, including public health institutions? How can people remain motivated to wear masks and distance themselves if they cannot afford basic necessities and work jobs without adequate pay and leave policies? We ask these questions to illustrate how socioeconomic disparities can marginalize people if they feel ignored, apathetic, or resentful of those better off or those in power whom they perceive to “not be doing enough.” This marginalization precludes the formation of solidarity. There are instances when a population has disparate access to resources and social capital, but solidarity may still emerge from a shared goal or vision for the future. For example, a heterogeneous population living in the same town may come together to protest an environmental injustice that impacts their water supply with the common goal of securing access to safe drinking water. However, many populations in the US failed to recognize shared goals of this kind during the COVID-19 pandemic. A significant minority of the US population was reluctant to acknowledge the severity of COVID-19 infection and thus refused to participate in efforts to mitigate its spread. Even between groups who shared the goal of slowing COVID-19 transmission, the methods were widely debated. Approximately 20 percent of the adult population eligible for vaccination remains unvaccinated.[19] Governmental bodies responsible for disseminating information, coordinating the allocation of resources, and establishing guidelines have a large role in mediating these disagreements and intervening in socioeconomic conditions that impact people's ability and willingness to engage in solidarity. III. Solidarity, Social Justice, and the Role of Public Health Institutions Adopting a lens of social justice provides further insights into how public health actors impact solidarity. Powers and Faden argue that the “foundational moral justification for the social institution of public health is social justice.”[20] Their theory of social justice has two aims. First, it ensures that everyone has a sufficient amount of the six core elements of well-being and that public health institutions are responsible for “adopting policies and creating environments” where all can flourish.[21] Second, public health institutions should distribute resources meant to promote well-being and focus on the “needs of those who are the most disadvantaged.”[22] Public health institutions should enact policies that address injustice. In doing so, public health institutions can seed the opportunity to build solidarity from the bottom up. Equipping individuals and communities with resources will foster cooperation and adherence to policies that require solidarity, such as masking and vaccination. This is consistent with arguments illustrating how institutions such as Tribal governments promote the conditions needed for their group, and especially its most vulnerable members, to flourish.[23] Addressing social determinants of health with a social justice lens will create the circumstances under which more individuals and groups can find common causes and foster solidarity. In the long run, such efforts may result in the establishment of values and practices from the bottom up. There are societal and public health preconditions required before institutions can expect their audience to act in solidarity with one another. Through their great influence over information and resources, public institutions do have the power to impact what values are most widespread. Furthermore, public health may foster trust and hope, which are important psychosocial factors that influence collective action,[24] if policies increase access to resources that promote well-being. Messaging efficacy also depends on the context of public trust, education, and whether the institutions meet one’s basic needs. Disparate messaging across different public institutions may confuse or disillusion individuals. To apply our theory of solidarity to the decision to vaccinate, a policy would be to foster conditions that facilitate access to vaccines and information about vaccine efficacy instead of imposing a top-down mandate without first eliciting public trust. IV. Counterargument Some argue that discordant public health messaging, ineffective government, and inadequate social programs can also bring people together under pressure and foster solidarity. One may argue that the most powerful motivators towards solidarity are strife and disparity, as evidenced throughout history. During the pandemic alone, political struggle and personal hardship inspired solidarity in the US, from individual neighbors helping each other to mutual aid groups forming across communities. We thus do not claim that solidarity is possible only when our government programs and public health institutions are most effective. We instead point out that solidarity can be further hindered when people feel alienated, hopeless, and pitted against each other. CONCLUSION Many competing conceptualizations of solidarity persist in the bioethics literature, and Prainsack and Buyx offer one compelling framework that public health ethicists continue to draw upon.[25] However, their framework fails to acknowledge how public health institutions impact interpersonal and group solidarity. Public health institutions can foster solidarity through actions other than mere messaging, invoking catchphrases like “we are all in this together.” Efforts to address socioeconomic preconditions and alleviate health disparities can cultivate group solidarity. As we saw during the pandemic, cooperation and solidarity go hand-in-hand with disease mitigation efforts; solidarity has clear intrinsic value.[26] As this relationship becomes more apparent, we will continue to see attempts from public health institutions to foster or invoke solidarity. Therefore, public health institutions would be remiss to ignore their role in addressing the social determinants of health. Adopting a social justice lens when planning public health interventions will clarify and strengthen their role in facilitating solidarity. Ultimately, if health disparities continue to persist or widen, it is very hard to imagine how group solidarity can ever be achieved. The widescale adoption of many public health measures needed to promote health and well-being would be conducive to solidarity. - Disclaimer: The opinions expressed are the authors’ and do not represent the views of the NIH, DHHS, or the U.S. government. Funding Disclosure: This work was supported in part by the Intramural Program of the National Institutes of Health Clinical Center. - [1] John J Mulvihill et al., “Ethical Issues of CRISPR Technology and Gene Editing through the Lens of Solidarity,” British Medical Bulletin 122 (2017): 17–29, https://doi.org/10.1093/bmb/ldx002; Ben Saunders, “Altruism or Solidarity? The Motives for Organ Donation and Two Proposals,” Bioethics 26, no. 7 (September 2012): 376–81, https://doi.org/10.1111/j.1467-8519.2012.01989.x; -Vanessa Y Hiratsuka, “SPECIAL REPORT: A Critical Moment in Bioethics: Reckoning with Anti-Black Racism through Intergenerational Dialogue A Call for Solidarity in Bioethics: Confronting Anti-Black Racism Together,” 2022, https://doi.org/10.1002/hast.1380. [2] Prainsack and Buyx, Solidarity: Reflections on an Emerging Concept in Bioethics London: Nuffield Council on Bioethics, 2011; Prainsack and Buyx, “Solidarity in Contemporary Bioethics--towards a New Approach.” Bioethics 26, no. 7 (September 2012): 343–50. https://doi.org/10.1111/J.1467-8519.2012.01987.X. [3] Bob Simpson, “A ‘We’ Problem for Bioethics and the Social Sciences: A Response to Barbara Prainsack,” Science, Technology, & Human Values 43, no. 1 (January 12, 2018): 45–55, https://doi.org/10.1177/0162243917735899. [4] Barbara Prainsack and Alena Buyx, Solidarity: Reflections on an Emerging Concept in Bioethics (London: Nuffield Council on Bioethics, 2011). [5] Barbara Prainsack and Alena Buyx, “Solidarity in Contemporary Bioethics--towards a New Approach,” Bioethics 26, no. 7 (September 2012): 343–50, https://doi.org/10.1111/J.1467-8519.2012.01987.X. [6] Bridget Pratt, Phaik Yeong Cheah, and Vicki Marsh, “Solidarity and Community Engagement in Global Health Research,” The American Journal of Bioethics : AJOB 20, no. 5 (May 3, 2020): 43–56, https://doi.org/10.1080/15265161.2020.1745930; Sara Chandros Hull, F. Leah Nez (Diné), and Juliana M. Blome, “Solidarity as an Aspirational Basis for Partnership with Tribal Communities,” The American Journal of Bioethics 21, no. 10 (October 3, 2021): 14–17, https://doi.org/10.1080/15265161.2021.1965258; Mbih J. Tosam et al., “Global Health Inequalities and the Need for Solidarity: A View from the Global South,” Developing World Bioethics 18, no. 3 (September 1, 2018): 241–49, https://doi.org/10.1111/DEWB.12182. [7] Peter West-Oram, “Solidarity Is for Other People: Identifying Derelictions of Solidarity in Responses to COVID-19,” Journal of Medical Ethics 47, no. 2 (February 1, 2021): 65–68, https://doi.org/10.1136/MEDETHICS-2020-106522; Barbara Prainsack, “Solidarity in Times of Pandemics,” Democratic Theory 7, no. 2 (December 1, 2020): 124–33, https://doi.org/10.3167/DT.2020.070215; F. Marijn Stok et al., “Social Inequality and Solidarity in Times of COVID-19,” International Journal of Environmental Research and Public Health 18, no. 12 (June 2, 2021), https://doi.org/10.3390/IJERPH18126339; Ming Jui Yeh, “Solidarity in Pandemics, Mandatory Vaccination, and Public Health Ethics,” American Journal of Public Health 112, no. 2 (February 1, 2022): 255–61, https://doi.org/10.2105/AJPH.2021.306578; Barbara Prainsack, “Beyond Vaccination Mandates: Solidarity and Freedom During COVID-19.,” Am J Public Health 112, no. 2 (February 1, 2022): 232–33, https://doi.org/10.2105/AJPH.2021.306619. [8] Prainsack and Buyx, Solidarity: Reflections on an Emerging Concept in Bioethics London: Nuffield Council on Bioethics, 2011; Prainsack and Buyx, “Solidarity in Contemporary Bioethics--towards a New Approach.” Bioethics 26, no. 7 (September 2012): 343–50. https://doi.org/10.1111/J.1467-8519.2012.01987.X. [9] Prainsack and Buyx, Solidarity: Reflections on an Emerging Concept in Bioethics London: Nuffield Council on Bioethics, 2011; Prainsack and Buyx, “Solidarity in Contemporary Bioethics--towards a New Approach.” Bioethics 26, no. 7 (September 2012): 343–50. https://doi.org/10.1111/J.1467-8519.2012.01987.X. [10] Yeh, “Solidarity in Pandemics, Mandatory Vaccination, and Public Health Ethics”; Prainsack, “Beyond Vaccination Mandates: Solidarity and Freedom During COVID-19.” [11] Ho, Anita, and Iulia Dascalu. "Relational solidarity and COVID-19: an ethical approach to disrupt the global health disparity pathway." Global Bioethics 32, no. 1 (2021): 34-50; West-Oram, Peter. "Solidarity is for other people: identifying derelictions of solidarity in responses to COVID-19." Journal of Medical Ethics 47, no. 2 (2021): 65-68. [12] Monica Webb Hooper, Anna María Nápoles, and Eliseo J. Pérez-Stable, “COVID-19 and Racial/Ethnic Disparities,” JAMA 323, no. 24 (June 23, 2020): 2466, https://doi.org/10.1001/jama.2020.8598. [13] Prainsack, Barbara. “Beyond Vaccination Mandates: Solidarity and Freedom During COVID-19.” Am J Public Health 112, no. 2 (February 1, 2022): 232–33. https://doi.org/10.2105/AJPH.2021.306619. [14] Camille A Clare, “Telehealth and the Digital Divide as a Social Determinant of Health during the COVID-19 Pandemic,” Network Modeling Analysis in Health Informatics and Bioinformatics 10 (2021): 26, https://doi.org/10.1007/s13721-021-00300-y. [15] Patrick Nana-Sinkam et al., “Health Disparities and Equity in the Era of COVID-19,” Journal of Clinical and Translational Science 5, no. 1 (March 16, 2021): e99, https://doi.org/10.1017/cts.2021.23. [16] Kathryn M Leifheit et al., “Expiring Eviction Moratoriums and COVID-19 Incidence and Mortality,” American Journal of Epidemiology 190, no. 12 (December 1, 2021): 2503–10, https://doi.org/10.1093/aje/kwab196. [17] Barbara Prainsack, “Solidarity in Times of Pandemics,” Democratic Theory 7, no. 2 (December 1, 2020): 124–33, https://doi.org/10.3167/DT.2020.070215 [18] Maximilian Agostini and Martijn van Zomeren, “Toward a Comprehensive and Potentially Cross-Cultural Model of Why People Engage in Collective Action: A Quantitative Research Synthesis of Four Motivations and Structural Constraints.,” Psychological Bulletin 147, no. 7 (July 2021): 667–700, https://doi.org/10.1037/bul0000256. [19] Department of Health and Human Services (HHS) Centers for Disease Control and Prevention (HHS/CDC), “COVID Data Tracker,” 2023, https://covid.cdc.gov/covid-data-tracker. [20] Powers, Madison, and Ruth Faden. Social Justice: The Moral Foundation of Public Health and Health Policy. 1st editio. New York: Oxford Press, 2006, p. 9 and Chapter 4 [21] Powers and Faden, Social Justice: The Moral Foundation of Public Health and Health Policy; Madison Powers and Ruth Faden, Structural Injustice: Power, Advantage, and Human Rights (New York: Oxford University Press, 2019). [22] Powers, Madison, and Ruth Faden. Social Justice: The Moral Foundation of Public Health and Health Policy. 1st editio. New York: Oxford Press, 2006, p. 10 [23] Bobby Saunkeah et al., “Extending Research Protections to Tribal Communities,” The American Journal of Bioethics 21, no. 10 (October 3, 2021): 5–12, https://doi.org/10.1080/15265161.2020.1865477. [24] Agostini and van Zomeren, “Toward a Comprehensive and Potentially Cross-Cultural Model of Why People Engage in Collective Action: A Quantitative Research Synthesis of Four Motivations and Structural Constraints.” [25] Prainsack and Buyx, Solidarity: Reflections on an Emerging Concept in Bioethics. [26] Ruth Chadwick, “COVID‐19 and the Possibility of Solidarity,” Bioethics 34, no. 7 (September 8, 2020): 637–637, https://doi.org/10.1111/bioe.12813. (shrink)

In this article, we analyse content from two recent reports to examine how a public health framework to cognitive enhancement is emerging. We find that, in several areas, these reports provide population-level arguments both for and against the use of cognitive enhancers. In discussing these arguments, we look at how these reports are indicative of potentially innovative frameworks—epidemiological, risk/benefit and socio-historical—by which to explore the public health impact of cognitive enhancement. Finally, we argue that these reports are suggestive (...) of both tensions between the bioethical and public health approaches and are also indicative of how these two frameworks can, in part, be seen as complementary. (shrink)

This special issue addresses the legacy of the U.S. Public Health Service Syphilis Study on health reform, particularly the Affordable Care Act. This article offers readers a guide to the themes that emerge in this issue. These themes include individual consent interrelated to consequences in populations issues, need for better government oversight in research and health care, and the need for overhauling our bioethics training to develop a population-level, culturally driven approach to research bioethics. We hope (...) the guidance offered in this issue will help shape a new framework to bioethics that can be integrated into the foundation of health care reform. (shrink)

Sober (1984) presents an account of selection motivated by the view that one property can causally explain the occurrence of another only if the first plays a unique role in the causal production of the second. Sober holds that a causal property will play such a unique role if it is a population level cause of its effect, and on this basis argues that there is selection for a trait T only if T is a population (...) class='Hi'>level cause of survival and reproductive success. Sterelny and Kitcher (1988) claim against Sober that some traits directly subject to selection will not satisfy the probabilistic condition on population level causation. In this paper I show that Sober has the resources to resist the Sterelny-Kitcher complaint, but I argue that not all traits that satisfy the probabilistic condition play the required unique role in the production of their effects. (shrink)

This season’s issue includes two articles on a quickly expanding topic in bioethics: the ethics of enhancement. There are many kinds of enhancement both actual and imagined: we can enhance people’s physical, aesthetic, cognitive, or moral capacities, for instance; individuals might choose particular enhancements, parents might choose them for their future children, or states might institute them at the widespread population level; the enhancements might be technologically complex or take the form of low-tech education and training; they (...) might be permanent genetic features or swappable technological prosthetics; and so forth. Many discussions of the ethics of enhancement are concerned.. (shrink)

Recent discussions in the philosophy of biology have brought into question some fundamental assumptions regarding evolutionary processes, natural selection in particular. Some authors argue that natural selection is nothing but a population-level, statistical consequence of lower-level events (Matthen and Ariew [2002]; Walsh et al. [2002]). On this view, natural selection itself does not involve forces. Other authors reject this purely statistical, population-level account for an individual-level, causal account of natural selection (Bouchard and Rosenberg [2004]). (...) I argue that each of these positions is right in one way, but wrong in another; natural selection indeed takes place at the level of populations, but it is a causal process nonetheless. (shrink)

As the world's population ages, governments and non-governmental organizations in developed countries are promoting healthy cognitive ageing to reduce the rate of age-related cognitive decline and sustain economic productivity in an ageing workforce. Recommendations from the Productivity Commission, Dementia Australia, Government Office for Science, Presidential Commission for the Study of Bioethical Issues, Institute of Medicine, among others, are encouraging older adults to engage in mental, physical, and social activities. These lifestyle recommendations for healthy cognitive ageing are timely and well (...) supported by scientific evidence but they make implicit normative judgments about the responsibility of ageing individuals to prevent cognitive decline. Ethical tensions arise when this individual responsibility collides with social and personal realities of ageing populations. First, we contextualize the priority given to healthy cognitive ageing within the current brain-based medical and social discourses. Second, we explore the individual responsibility by examining the economic considerations, medical evidence and individual interests that relate to the priority given to healthy cognitive ageing. Third, we identify three key ethical challenges for policymakers seeking to implement lifestyle recommendations as an effective population-level approach to healthy cognitive ageing. The result is a prospectus for future in-depth analysis of ethical tensions that arise from current policy discussions of healthy cognitive ageing. (shrink)

This paper is about mechanisms and models, and how they interact. In part, it is a response to recent discussion in philosophy of biology regarding whether natural selection is a mechanism. We suggest that this debate is indicative of a more general problem that occurs when scientists produce mechanistic models of populations and their behaviour. We can make sense of claims that there are mechanisms that drive population-level phenomena such as macroeconomics, natural selection, ecology, and epidemiology. But talk (...) of mechanisms and mechanistic explanation evokes objects with well-defined and localisable parts which interact in discrete ways, while models of populations include parts and interactions that are neither local nor discrete in any actual populations. This apparent tension can be resolved by carefully distinguishing between the properties of a model and those of the system it represents. To this end, we provide an analysis that recognises the flexible relationship between a mechanistic model and its target system. In turn, this reveals a surprising feature of mechanistic representation and explanation: it can occur even when there is a mismatch between the mechanism of the model and that of its target. Our analysis reframes the debate, providing an alternative way to interpret scientists’ mechanism-talk , which initially motivated the issue. We suggest that the relevant question is not whether any population-level phenomenon such as natural selection is a mechanism, but whether it can be usefully modelled as though it were a particular type of mechanism. (shrink)

When making substituted judgments for incapacitated patients, surrogates often struggle to guess what the patient would want if they had capacity. Surrogates may also agonize over having the (sole) responsibility of making such a determination. To address such concerns, a Patient Preference Predictor (PPP) has been proposed that would use an algorithm to infer the treatment preferences of individual patients from population-level data about the known preferences of people with similar demographic characteristics. However, critics have suggested that even (...) if such a PPP were more accurate, on average, than human surrogates in identifying patient preferences, the proposed algorithm would nevertheless fail to respect the patient’s (former) autonomy since it draws on the ‘wrong’ kind of data: namely, data that are not specific to the individual patient and which therefore may not reflect their actual values, or their reasons for having the preferences they do. Taking such criticisms on board, we here propose a new approach: the Personalized Patient Preference Predictor (P4). The P4 is based on recent advances in machine learning, which allow technologies including large language models to be more cheaply and efficiently ‘fine-tuned’ on person-specific data. The P4, unlike the PPP, would be able to infer an individual patient’s preferences from material (e.g., prior treatment decisions) that is in fact specific to them. Thus, we argue, in addition to being potentially more accurate at the individual level than the previously proposed PPP, the predictions of a P4 would also more directly reflect each patient’s own reasons and values. In this article, we review recent discoveries in artificial intelligence research that suggest a P4 is technically feasible, and argue that, if it is developed and appropriately deployed, it should assuage some of the main autonomy-based concerns of critics of the original PPP. We then consider various objections to our proposal and offer some tentative replies. (shrink)

Epidemiologists’ discussions on causation are not always very enlightening with regard to the notion of ‘cause’ in epidemiology. Epidemiologists rightly work from a science-based approach to causation in epidemiology, but largely disagree about the matter. Disagreement may be partly due to confusion of the question of useful concepts for causal inference in epidemiological practice with the question of the metaphysical presuppositions of causal concepts used in epidemiology. In other words, epidemiologists seem to confuse the practical results of epidemiological research at (...) the population level with the metaphysical views about the reality of disease causation at the individual level in their writings on causation. (shrink)

Effectiveness is a key criterion in assessing the justification of antibiotic resistance interventions. Depending on an intervention’s effectiveness, burdens and costs will be more or less justified, which is especially important for large scale population-level interventions with high running costs and pronounced risks to individuals in terms of wellbeing, integrity and autonomy. In this paper, we assess the case of routine hospital screening for multi-drug-resistant Gram-negative bacteria (MDRGN) from this perspective. Utilizing a comparison to screening programs for Methicillin-Resistant (...) Staphylococcus aureus (MRSA) we argue that current screening programmes for MDRGN in low endemic settings should be reconsidered, as its effectiveness is in doubt, while general downsides to screening programs remain. To accomplish justifiable antibiotic stewardship, MDRGN screening should not be viewed as a separate measure, but rather as part of a comprehensive approach. The program should be redesigned to focus on those at risk of developing symptomatic infections with MDRGN rather than merely detecting those colonised. (shrink)

This article analyzes the bioethical implications of using a control/placebo group when conducting clinical trials (CTs) investigating the treatment of periodontitis. For this, the deductive method was used, proposing the interrelation of values, and a scoping systematic review was carried out. A total of 53% of the CTs reviewed were performed in low- and middle-income (LMI) countries, and 92% used a control/placebo group as a comparison group. Although there is a gold standard for the adjunctive treatment of periodontitis, the research (...) ethics committees of most of the analyzed studies approved the use of control/placebo groups for the performance of CTs that did not explore new therapeutic alternatives. In some cases, the CT protocols were not approved by ethics committees, nor was informed consent used. In the LMI countries, a shorter period of recruitment was observed for patients who attended universities and public hospitals. Likewise, most of the CTs reviewed had public funding, a significant amount of which came from the pharmaceutical industry. Only one CT reported the low economic and educational level of its participants. Furthermore, none of the authors of the reviewed CTs declared conflicts of interest. Although the axiology of techno-science always takes into account at least the epistemic, technical and economic value systems, the hegemony of the economic values imposed by the pharmaceutical industry is evident in the performance of CTs investigating the treatment of periodontitis in LMI countries. (shrink)

Ethical issues arise in the world’s first population-level treatment of severe lead poisoning caused by small-scale mining for gold in rural Nigeria. Emergency medical intervention and environmental cleanup have reduced the mortality in children younger than 5 years from lead poisoning from over 40 to 2.5 per cent leaving little evidence of the harms caused by lead poisoning. In the absence of obvious sequelae, family adherence to long-term intensive therapy to remove accumulated lead reservoirs in children wanes and (...) some community miners challenge safer mining interventions to prevent recontamination of the environment with lead. This letter raises questions regarding community versus individual rights in public health interventions and patient autonomy. (shrink)

Extent health humanities readings of Gabriel García Márquez’s _Love in the Time of Cholera_ have focused on the doctor-patient relationship, the physician-scientist as a model for aspiring practitioners, and how individuals relate to the novel’s health themes of death, disease, and disability. However, such medicine-focused readings neglect the population-level public health concerns of the novel as they relate to contagion, community, and quarantine. This paper contributes to the growing field of public health humanities by using a close reading (...) method to explore how the competing endemic and epidemic public health issues shape the plot and metaphors of the novel. (shrink)

Given that health systems research involves different aims, approaches, and methodologies as compared to more traditional clinical trials, the ethical issues present in HSR may be unique or particularly nuanced. This article outlines eight pertinent ethical issues that are particularly salient in HSR and argues that the ethical review process should be better tailored to ensure more efficient and appropriate oversight of HSR with adequate human protections, especially in low- and middle-income countries. The eight ethical areas we discuss include the (...) nature of intervention, types of research subjects, units of intervention and observation, informed consent, controls and comparisons, risk assessment, inclusion of vulnerable groups, and benefits of research. HSR involving human participants is necessary to ensure health systems strengthening and quality of care and to guide public policy intelligently. Health systems researchers must carefully define their intent and goals and openly clarify the values that may influence the premises and design of protocols. As new types of population-level research activities become more commonplace, it is critical that institutional review board and research ethics committee review processes evolve to evaluate these research protocols in ways that address the nuanced features of these studies. (shrink)

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how (...) public involvement can meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)

Significant criticisms have been raised regarding the ethical and psychological basis of living wills. Various solutions to address these criticisms have been advanced, such as the use of surrogate decision makers alone or data science‐driven algorithms. These proposals share a fundamental weakness: they focus on resolving the problems of living wills, and, in the process, lose sight of the underlying ethical principle of advance care planning, autonomy. By suggesting that the same sweeping solutions, without opportunities for choice, be applied to (...) all, individual patients are treated as population‐level groups—as a theoretical patient who represents a population, not the specific patient crafting his or her individualized future care plans. Instead, advance care planning can be improved through a multimodal approach that both mitigates cognitive biases and allows for customization of the decision‐making process by allowing for the incorporation of a variety of methods of advance care planning. (shrink)

Population-level biomedical research has become crucial to the health system’s ability to improve the health of the population. This form of research raises a number of well-documented ethical concerns, perhaps the most significant of which is the inability of the researcher to obtain fully informed specific consent from participants. Two proposed technical solutions to this problem of consent in large-scale biomedical research that have become increasingly popular are meta-consent and dynamic consent. We critically examine the ethical and (...) practical credentials of these proposals and find them lacking. We suggest that the consent problem is not solved by adopting a technology driven approach grounded in a notion of ‘specific’ consent but by taking seriously the role of research governance in combination with broader conceptions of consent. In our view, these approaches misconstrue the rightful location of authority in the way in which population-level biomedical research activities are structured and organized. We conclude by showing how and why the authority for determining the nature and shape of choice making about participation ought not to lie with individual participants, but rather with the researchers and the research governance process, and that this necessarily leads to the endorsement of a fully articulated broad consent approach. (shrink)