Ethics of early detection of disease risk factors: A scoping review.

BACKGROUND: Scientific and technological advancements in mapping and understanding the interrelated pathways through which biological and environmental exposures affect disease development create new possibilities for detecting disease risk factors. Early detection of such risk factors may help prevent disease onset or moderate the disease course, thereby decreasing associated disease burden, morbidity, and mortality. However, the ethical implications of screening for disease risk factors are unclear and the current literature provides a fragmented and case-by-case picture. METHODS: To identify key ethical considerations arising from the early detection of disease risk factors, we performed a systematic scoping review. The Scopus, Embase, and Philosopher's Index databases were searched for peer-reviewed, academic records, which were included if they were written in English or Dutch and concerned the ethics of (1) early detection of (2) disease risk factors for (3) disease caused by environmental factors or gene-environment interactions. All records were reviewed independently by at least two researchers. RESULTS: After screening 2034 titles and abstracts, and 112 full papers, 55 articles were included in the thematic synthesis of the results. We identified eight common ethical themes: (1) Reliability and uncertainty in early detection, (2) autonomy, (3) privacy, (4) beneficence and non-maleficence, (5) downstream burdens on others, (6) responsibility, (7) justice, and (8) medicalization and conceptual disruption. We identified several gaps in the literature, including a relative scarcity of research on ethical considerations associated with environmental preventive health interventions, a dearth of practical suggestions on how to address expressed concerns about overestimating health capacities, and a lack of insights into preventing undue attribution of health responsibility to individuals. CONCLUSIONS: The ethical concerns arising with the early detection of risk factors are often interrelated and complex. Comprehensive ethical analyses are needed that are better embedded in normative frameworks and also assess and weigh the expected benefits of early risk factor detection. Such research is necessary for developing and implementing responsible and fair preventive health policies.

Academic freedom under siege.

This paper describes a global pattern of declining academic freedom, often driven by powerful political interference with core functions of academic communities. It argues that countering threats to academic freedom requires doubling down on ethics, specifically standards of justice and fairness in pursuing knowledge and assigning warrant to beliefs. Using the example of the selection of a Qatari university to host the 2024 World Congress of Bioethics, the authors urge fairness towards diverse groups over time and efforts to counter injustices that conferences generate.

Sustainability as an Intrinsic Moral Concern for Solidaristic Health Care.

Environmental pollution and greenhouse gas emissions that contribute to climate change have adverse impacts on global health. Somewhat paradoxically, health care systems that aim to prevent and cure disease are themselves major emitters and polluters. In this paper we develop a justification for the claim that solidaristic health care systems should include sustainability as one of the criteria for determining which health interventions are made available or reimbursed - and which not. There is however a complication: most adverse health effects due to climate change do occur elsewhere in the world. If solidarity would commit us to take care of everyone's health, worldwide, it might imply that solidaristic health system cannot justifiably restrict universal access to their own national populations. In response we explain health solidarity is to be considered as a moral ideal. Such an ideal does not specify what societies owe to whom, but it does have moral implications. We argue that ignoring sustainability in political decision making about what health care is to be offered, would amount to betrayal of the ideal of solidarity.

[The moral ideal of planetary health: ethical implications for healthcare]. / Het morele ideaal van planetaire gezondheid.

Planetary health is not only a new field of research and practice; it is also a moral ideal. What are the implications for medicine and health care? In this article, we argue that within this ideal, health of humans, animals and also nature are worthy of protection for their own sake. These values can reinforce each other, but they may also conflict. We formulate a general framework that provides some direction for ethical reflection. Next we discuss implications of the ideal of planetary health for zoonotic disease outbreaks, for environmental sustainability of health care, and for global health and solidarity in the face of climate change. Planetary health demands much from health care, and this will also further exacerbate existing policy dilemmas.

[Moral dilemmas around health equity]. / Morele dilemma's rond gelijke kansen op gezondheid.

From the perspective of social justice and equality of opportunity, it is an important yet difficult aim of local governments to enhance the opportunity to be healthy among disadvantaged groups. Apart from a lack of knowledge about effective interventions, there can be uncertainty about what is morally the best thing to do. To get a better understanding of what these moral challenges are, we made an inventory of the ethical dilemmas faced by employees of the public health department of the Dutch City of Utrecht in their aspiration to achieve health equity. Based on both four structured discussions of these dilemmas with municipality employees, and central ideas and distinctions from the philosophical literature on social justice, we formulate five insights on what it means to take equality of opportunity as ideal in local public health policy. That is, 1) fostering equal opportunities to be healthy demands that moral choices are made within policy practice and the execution of policies; 2) fostering equal opportunities to be healthy demands a balancing act between realism and idealism; 3) substantial equality of opportunity in health demands more than formal opportunity; 4) fostering equal opportunities to be healthy works best by giving priority to the worst-off; 5) fostering equal opportunities to be healthy requires paternalism. These insights, together with the structuring questions, can support local policymakers in public health in the decisions they need to make, by clarifying which considerations contribute to health equity.

Healthcare workers' acceptability of influenza vaccination nudges: Evaluation of a real-world intervention.

Nudges have been proposed as an effective tool to stimulate influenza vaccination uptake in healthcare workers. However, the success of such nudges in practice is heavily reliant on their acceptance by the intended healthcare worker population, which has not been thoroughly examined to date. This study investigated healthcare workers' acceptability of diverse influenza vaccination nudges implemented in a real-world vaccination campaign and explored the relationship between nudge acceptability and vaccination uptake. A cross-sectional study was conducted among 244 Dutch hospital employees, following a hospital-wide influenza vaccination nudging intervention. A survey assessed healthcare workers' perceived acceptability of ten distinct influenza vaccination nudges, along with their vaccination status and relevant covariates (e.g., general perceptions regarding influenza vaccination of healthcare workers). Influenza vaccination nudges in general were deemed acceptable, with reward-based nudges being the least accepted, while digital vaccination forms, a mobile vaccination post, peer vaccination, and digital vaccination reminders were most appreciated. A higher overall acceptance of these nudges was associated with a greater likelihood of being vaccinated, particularly in healthcare workers with favorable perceptions of influenza vaccination usefulness. Our findings suggest that influenza vaccination nudges are an accepted means to systematically promote immunization of healthcare workers, and thus present a viable strategy for public health policies aimed at this group.

Facing difficult but unavoidable choices: Donor blood safety and the deferral of men who have sex with men.

Blood service organizations employ various ways to ensure transfusion blood safety, including the testing of all donations for transfusion-transmissible infections (TTI) and the exclusion of donors who are at increased risk of a recent infection. As some TTIs are more common among men who have sex with men (MSM), many jurisdictions (temporarily) defer the donation of blood by sexually active MSM. This boils down to a categorical exclusion of a large group solely on the basis of their sexual orientation, which is seen as unduly discriminatory and stigmatizing. Blood service organizations in the U.K. and the Netherlands have recently changed their deferral policies for MSM. The problem of the MSM deferral involves a conflict between fundamental rights: the right of MSM to equal treatment and the right to health of the recipients of blood and blood products. We distinguish and discuss three broad alternative options to the current categorical deferral of MSM donations: (1) completely abandoning donor selection on the basis of sexual behavior, (2) individual risk assessment of the sexual activities of each potential donor, and (3) individual risk assessment of the sexual activities of MSM only. The new U.K. policy falls within the second category, and the new Dutch policy is in the third category. We argue that each approach comes with moral costs but that the most reasonable option is different from the policies of both the U.K. and the Netherlands.

The (Un)fairness of Vaccination Freeriding.

For contagious diseases like measles a successful immunization program can result in herd protection. Small outbreaks may still occur but fade out soon, because the possibilities for the pathogen to spread in the 'herd' are very small. This implies that people who refuse to participate in such a program will still benefit from the protection it offers, but they don't do their part in maintaining protection. Isn't that a case of freeriding-and isn't that unfair towards all the people who do collaborate? If so, that might be considered an additional ground for making vaccination mandatory or compulsory. In this paper I argue that vaccination refusal can be considered as freeriding, but that this might not be unfair. The public good of herd protection is a peculiar public good because it supervenes on private benefits that are enjoyed by all who do opt for vaccination. For vaccinated individuals, the additional benefit of herd protection comes about, as it were, for free, and hence they can't complain that others benefit without sharing in the burdens. There are however still other grounds for making vaccination compulsory or at least for seeing refusal as a morally wrong choice.

Ethical Advice for an Intensive Care Triage Protocol in the COVID-19 Pandemic: Lessons Learned from The Netherlands.

At the height of the COVID-19 crisis in the Netherlands a shortness of intensive care beds was looming. Dutch professional medical organizations asked a group of ethicists for assistance in drafting guidelines and criteria for selection of patients for intensive care (IC) treatment in case of absolute scarcity, when medical selection criteria would no longer suffice. This article describes the Dutch context, the process of drafting the advice and reflects on the role of ethicists and lessons learned. We argue that timely interaction between clinical and ethical expertise is necessary since the distinction between medical and non-medical considerations is not as clearcut as sometimes assumed. Furthermore, pragmatic considerations related to the specifics of an epidemic are of importance, for example, in relation to prioritizing health care workers. As a consequence, any protocol already present before the pandemic would need alterations to fit the current situation. The 'fair innings' criterion we proposed, rephrased as an argument of intergenerational solidarity, was considered reasonable by professionals as well as patient organizations. While it is desirable to draft ethical guidelines in 'peacetime' as a matter of pandemic preparedness, the pressure of an actual crisis facilitates decision-making, although it will also complicate a more democratic approach.

Infection control measures in times of antimicrobial resistance: a matter of solidarity.

Control measures directed at carriers of multidrug-resistant organisms are traditionally approached as a trade-off between public interests on the one hand and individual autonomy on the other. We propose to reframe the ethical issue and consider control measures directed at carriers an issue of solidarity. Rather than asking "whether it is justified to impose strict measures", we propose asking "how to best care for a person's carriership and well-being in ways that do not imply an unacceptable risk for others?". A solidarity approach could include elevating baseline levels of precaution measures and accepting certain risks in cases where there is exceptionally much at stake. A generous national compensation policy that also covers for costs related to dedicated care is essential in a solidarity approach. An additional benefit of reframing the questions is that it helps to better acknowledge that being subjected to control measures is a highly personal matter.

Autonomous and informed decision-making: The case of colorectal cancer screening.

INTRODUCTION: It is increasingly considered important that people make an autonomous and informed decision concerning colorectal cancer (CRC) screening. However, the realisation of autonomy within the concept of informed decision-making might be interpreted too narrowly. Additionally, relatively little is known about what the eligible population believes to be a 'good' screening decision. Therefore, we aimed to explore how the concepts of autonomous and informed decision-making relate to how the eligible CRC screening population makes their decision and when they believe to have made a 'good' screening decision. METHODS: We conducted 27 semi-structured interviews with the eligible CRC screening population (eighteen CRC screening participants and nine non-participants). The general topics discussed concerned how people made their CRC screening decision, how they experienced making this decision and when they considered they had made a 'good' decision. RESULTS: Most interviewees viewed a 'good' CRC screening decision as one based on both reasoning and feeling/intuition, and that is made freely. However, many CRC screening non-participants experienced a certain social pressure to participate. All CRC screening non-participants viewed making an informed decision as essential. This appeared to be the case to a lesser extent for CRC screening participants. For most, experiences and values were involved in their decision-making. CONCLUSION: Our sample of the eligible CRC screening population viewed aspects related to the concepts of autonomous and informed decision-making as important for making a 'good' CRC screening decision. However, in particular the existence of a social norm may be affecting a true autonomous decision-making process. Additionally, the present concept of informed decision-making with its strong emphasis on making a fully informed and well-considered decision does not appear to be entirely reflective of the process in practice. More efforts could be made to attune to the diverse values and factors that are involved in deciding about CRC screening participation.

When are infection risks of blood transfusion tolerable? Towards understanding the ethical views of stakeholders in the blood supply.

BACKGROUND AND OBJECTIVES: The perception of transfusion-transmitted infections (TTIs) is sensitive to various concerns besides the probability and impact of infection, and some of these concerns may be ethically relevant. This paper aims to advance thinking about blood safety policies by exploring and explaining stakeholders' reasons to consider TTI risks tolerable or intolerable. MATERIALS AND METHODS: Inspired by critical empirical ethics and phenomenological hermeneutics, we held interviews and focus group discussions to explore the moral experience of policymakers, hematologists, blood donors and recipients. Respondents were invited to discuss general concerns about the blood supply, to address the tolerability of TTI risks compared with other hazards and to comment on the costs of blood safety. Arguments for tolerance or intolerance towards TTI risks were analysed qualitatively. RESULTS: Stakeholders' views could be clustered into seven categories: (1) clinical impact; (2) probability of infection; (3) avoidability of infection; (4) cost and health benefits; (5) other consequences of safety measures; (6) non-consequentialist ethical arguments; and (7) stakeholders' interests. Various arguments were offered that resonate with current ethical thinking about blood safety. Assuming that resources spent on inefficient blood safety measures could be applied more beneficially elsewhere, for example, responders typically expressed tolerance towards TTI risks. Some other arguments seem novel, for instance arguments for risk intolerance based on the low probability of infection and arguments for risk tolerance if patients have a poor prognosis. CONCLUSION: Understanding the moral experience of stakeholders enriches ethical debate about blood safety and prepares developing more widely acceptable policies.

One Health as a moral dilemma: Towards a socially responsible zoonotic disease control.

During the last decade, the concept of One Health has become the international standard for zoonotic disease control. This call for transdisciplinary collaboration between professionals in human, animal and environmental health has produced several successes in zoonotic disease control, surveillance and research. Despite the lack of a clear definition, a shared agenda or institutional governance, One Health has proven to be a fruitful idea. Due to its ambiguity, the One Health concept functions as a boundary object: by leaving room for interpretation to fit different purposes, it facilitates cooperation. In many cases, this results in the promotion of health of humans, animals and the environment. However, there are also situations in which this mutual benefit of a One Health approach is not that evident, for instance, when healthy animals are culled to protect public health. Although such a strategy could well be part of a One Health approach, it is hard to understand how this contributes to the health of concerning animals. Consequently, these practices often lead to public debate. This raises questions on how we should understand the One Health concept in zoonotic disease control. Is it really about equally improving the health of humans, animals and the environment and is this even possible? Or is it ultimately just public health that counts? In cases of conflict between different values, the lack of a universal definition of the One Health concept contributes to this complexity. Although boundary objects have many positive aspects, in the context of One Health and zoonotic disease control, this conception seems to conceal underlying normative differences. To address moral dilemmas related to a One Health approach in zoonotic disease control, it is important to reflect on moral status and the meaning of health for humans, animals and the environment.

Ethics of Infection Control Measures for Carriers of Antimicrobial Drug-Resistant Organisms.

Many countries have implemented infection control measures directed at carriers of multidrug-resistant organisms. To explore the ethical implications of these measures, we analyzed 227 consultations about multidrug resistance and compared them with the literature on communicable disease in general. We found that control measures aimed at carriers have a range of negative implications. Although moral dilemmas seem similar to those encountered while implementing control measures for other infectious diseases, 4 distinct features stand out for carriage of multidrug-resistant organisms: carriage presents itself as a state of being; carriage has limited relevance for the health of the carrier; carriage has little relevance outside healthcare settings; and antimicrobial resistance is a slowly evolving threat on which individual carriers have limited effect. These features are of ethical relevance because they influence the way we traditionally think about infectious disease control and urge us to pay more attention to the personal experience of the individual carrier.

A Practice-Oriented Review of Health Concepts.

Whereas theories on health generally argue in favor of one specific concept, we argue that, given the variety of health practices, we need different concepts of health. We thus approach health concepts as a Wittgensteinian family of thick concepts. By discussing five concepts of health offered by (philosophical) theory, we argue that all capture something that seems relevant when we talk and think about health. Classifying these concepts reveals their family resemblances: each of these concepts differs from the others in at least one respect and resembles the others in several respects. Moreover, our classification shows that "health" always both describes a condition and evaluates that condition at the same time. Having both descriptive and evaluative dimensions, we can see health concepts as "thick concepts." It is because of this evaluative dimension that it is important to reflect on the question of what understanding of health guides specific practices. We show that the distinctions revealed by our classification can serve as a conceptual toolbox for reflection on the assumptions and purposes of particular health practices. Finally, we illustrate how such reflection could work out by briefly exploring three specific health practices.

Do conceptualisations of health differ across social strata? A concept mapping study among lay people.

OBJECTIVES: The legitimacy of policies that aim at tackling socioeconomic inequalities in health can be challenged if they do not reflect the conceptualisations of health that are valued in all strata. Therefore, this study analyses how different socioeconomic groups formulate their own answers regarding: what does health mean to you? DESIGN: Concept mapping procedures were performed in three groups that differ in educational level. All procedures followed exactly the same design. SETTING: Area of the city of Utrecht, the Netherlands. PARTICIPANTS: Lay persons with a lower, intermediate and higher educational level (±15/group). RESULTS: The concept maps for the three groups consisted of nine, eight and seven clusters each, respectively. Four clusters occurred in all groups: absence of disease/disabilities, health-related behaviours, social life, attitude towards life. The content of some of these differed between groups, for example, behaviours were interpreted as having opportunities to behave healthily in the lower education group, and in terms of their impact on health in the higher education group. Other clusters appeared to be specific for particular groups, such as autonomy (intermediate/higher education group). Finally, ranking ranged from a higher ranking of the positively formulated aspects in the higher education group (eg, lust for life) to that of the negatively formulated aspects in the lower education group (eg, having no chronic disease). CONCLUSION: Our results provide indications to suggest that people in lower socioeconomic groups are more likely to show a conceptualisation of health that refers to (1) the absence of health threats (vs positive aspects), (2) a person within his/her circumstances (vs quality of own body/mind), (3) the value of functional (vs hedonistic) notions and (4) an accepting (vs active) attitude towards life.

Donor blood screening and moral responsibility: how safe should blood be?

Some screening tests for donor blood that are used by blood services to prevent transfusion-transmission of infectious diseases offer relatively few health benefits for the resources spent on them. Can good ethical arguments be provided for employing these tests nonetheless? This paper discusses-and ultimately rejects-three such arguments. According to the 'rule of rescue' argument, general standards for cost-effectiveness in healthcare may be ignored when rescuing identifiable individuals. The argument fails in this context, however, because we cannot identify beforehand who will benefit from additional blood screening tests. On the 'imposed risk' argument, general cost-effectiveness standards do not apply when healthcare interventions impose risks on patients. This argument ignores the fact that imposing risks on patients is inevitable in healthcare and that these risks can be countered only within reasonable limits. Finally, the 'manufacturing standard' argument premises that general cost-effectiveness standards do not apply to procedures preventing the contamination of manufactured medical products. We contend that while this argument seems reasonable insofar as commercially manufactured medical products are concerned, publicly funded blood screening tests should respect the standards for general healthcare. We conclude that these particular arguments are unpersuasive, and we offer directions to advance the debate.