ABSTRACT:Many companies engage in dialogue with nongovernmental organizations about societal issues. The question is what a regulative ideal for such dialogues should be. In the literature on corporate social responsibility, the Habermasian notion of communicative action is often presented as a regulative ideal for stakeholder dialogue, implying that actors should aim at consensus and set strategic considerations aside. In this article, we argue that in many cases, communicative action is not a suitable regulative ideal for dialogue between companies and NGOs. (...) We contend that there is often an adversarial element in the relation between companies and NGOs, and that an orientation towards consensus can be in tension with this adversarial relation. We develop an alternative approach to stakeholder dialogue called ‘agonistic deliberation.’ In this approach, conflict and strategic considerations play a legitimate and, up to a certain point, desirable role. (shrink)

In these twelve papers notable ethicists use the resources of ethical theory to illuminate important theoretical and practical topics, including the nature of public health, notions of community, population bioethics, the legitimate role of law, the use of cost-effectiveness as a methodology, vaccinations, and the nature of infectious disease.

ABSTRACTIn this article, we explore the debate on corporate citizenship and the role of business in global governance. In the debate on political corporate social responsibility it is assumed that under globalization business is taking up a greater political role. Apart from economic responsibilities firms assume political responsibilities taking up traditional governmental tasks such as regulation of business and provision of public goods. We contrast this with a subsidiarity-based approach to governance, in which firms are seen as intermediate actors who (...) have political co-responsibilities in society endowed upon them by national governmental institutions. We argue that both approaches face conceptual and empirical problems, and do not make clear the content and scope of political corporate responsibility. Based on Iris Marion Young’s account of political responsibility we argue that corporate actors and governmental actors have a shared responsibility to tackle societal problems. Taking political corporate responsibility not only entails engaging in private action or engaging in public–private partnerships, but it also includes aiding governmental actors to remedy injustice or even create public institutions where they do not yet exist. By adding this perspective we contribute to the debate on responsibility in corporate citizenship and clarify the political role business can play in global governance. (shrink)

Emerging infectious diseases such as Ebola, Hendra, SARS, West Nile, Hepatitis E and avian influenza have led to a renewed recognition of how diseases in human beings, wildlife and livestock are interlinked. The changing prevalence and spread of such infections are largely determined by human activities and changes in environment and climate—where the latter are often also caused by human activities. Since the beginning of the 21st century, these insights have been brought together under the heading of OneHealth—a concept that (...) calls for interdisciplinary collaboration between various sciences as well as professional practices to promote and protect the health of human and non-human animals and the natural environment. Just as insights from public health have led to a broadened focus for health policy and medical care, from treating individual patients to protecting and promoting population health, OneHealth calls for an even broader perspective, including a concern for the environment and animals, and for social-cultural factors that affect human, animal and environmental health. OneHealth not only covers collaborative work to understand and control zoonotic diseases, but also other ways in which interactions between animals, plants and humans may positively or negatively impact on each other’s health. Thus, studies in veterinary medicine and environmental sciences may lead to new insights in human medicine, and vice versa. Acknowledgment of the links between environmental, animal and social health is of course not a novel insight. Hippocrates already pointed to the importance of a clean environment as a requirement for good health; the early public health movements emphasized hygienic living conditions including good-quality housing, sewage systems and clean air and water; and the founders of modern medicine such as William Osler and Rudolf Virchow promoted …. (shrink)

Tolerance for blood transfusion risks is very low, as evidenced by the implementation of expensive blood tests and the rejection of gay men as blood donors. Is this low risk tolerance supported by the precautionary principle, as defenders of such policies claim? We discuss three constraints on applying the precautionary principle and show that respecting these implies tolerating certain risks. Consistency means that the precautionary principle cannot prescribe precautions that it must simultaneously forbid taking, considering the harms they might cause. (...) Avoiding counterproductivity requires rejecting precautions that cause more harm than they prevent. Proportionality forbids taking precautions that are more harmful than adequate alternatives. When applying these constraints, we argue, attention should not be restricted to harms that are human caused or that affect human health or the environment. Tolerating transfusion risks can be justified if available precautions have serious side effects, such as high social or economic costs. (shrink)

ABSTRACTThe responsibility of the food and beverage industry for noncommunicable diseases is a controversial topic. Public health scholars identify the food and beverage industry as one of the main contributors to the rise of these diseases. We argue that aside from moral duties like not doing harm and respecting consumer autonomy, the food industry also has a responsibility for addressing the structural injustices involved in food-related health problems. Drawing on the work of Iris Marion Young, this article first shows how (...) food-related public health problems can be understood as structural injustices. Second, it makes clear how the industry is sustaining these health injustices, and that due to this connection, corporate actors share responsibility for addressing food-related health problems. Finally, three criteria are discussed as grounds for attributing responsibility, allowing for further specification on what taking responsibility for food-related health problems can entail in corporate practice. (shrink)

Nudging is considered a promising approach for behavioural change. At the same time, nudging has raised ethical concerns, specifically in relation to the impact of nudges on autonomous choice. A complexity is that in this debate authors may appeal to different understandings or dimensions of autonomy. Clarifying the different conceptualisations of autonomy in ethical debates around nudging would help to advance our understanding of the ethics of nudging. A literature review of these considerations was conducted in order to identify and (...) differentiate between the conceptualisations of autonomy. In 33 articles on the ethics of nudging, we identified 280 autonomy considerations, which we labelled with 790 unique autonomy codes and grouped under 61 unique super-codes. Finally, we formulated three general conceptualisations of autonomy. Freedom of choice refers to the availability of options and the environment in which individuals have to make choices. Agency involves an individual's capacity to deliberate and determine what to choose. Self-constitution relates to someone's identity and self-chosen goals. In the debate about the ethics of nudging, authors refer to different senses of autonomy. Clarifying these conceptualisations contributes to a better understanding of how nudges can undermine or, on the other hand, strengthen autonomy. (shrink)

In this article, we critically reflect on the responsibilities that the food industry has for public health. Although food companies are often significant contributors to public health problems, the mere possibility of corporate responsibility for public health seems to be excluded in the academic public health discourse. We argue that the behavior of several food companies reflects a split corporate personality, as they contribute to public health problems and simultaneously engage in activities to prevent them. By understanding responsibility for population (...) health as a shared responsibility, we reassess the moral role of the food industry from a forward-looking perspective on responsibility and ask what food companies can and should do to promote health. (shrink)

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. (shrink)

Preventive medicine is sometimes criticised as it contributes to medicalization of normal life. The concept ‘medicalization’ has been introduced by Zola to refer to processes in which the labels ‘healthy’ and ‘ill’ are made relevant for more and more aspects of human life. If preventive medicine contributes to medicalization, would that be morally problematic? My thesis is that such a contribution is indeed morally problematic. The concept is sometimes used to express moral intuitions regarding the practice of prevention and health (...) promotion. Through analysis of these intuitions as well as some other moral concerns, I give an explication of the moral problems of medicalization within the context of preventive medicine. (shrink)

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 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. (shrink)

ABSTRACT If we have a duty not to infect others, how far does it go? This question is often discussed with respect to HIV transmission, but reflection on other diseases like influenza raises a number of interesting theoretical issues. I argue that a duty to avoid infection not only yields requirements for persons who know they carry a disease, but also for persons who know they are at increased risk, and even for those who definitely know they are completely healthy. (...) Given the numerous ways in which human interaction facilitates the spread of communicable diseases, a maximum level of precaution would be very demanding – possibly unreasonably demanding. The ‘over‐demandingness problem’ is mostly invoked as a criticism of utilitarianism, as this theory requires moral agents to always maximise general welfare, even at significant cost for themselves. However, I argue that, with respect to precautions against infectious diseases like influenza, utilitarianism is able to avoid the over‐demandingness problem. A contractualist account, on the other hand, whilst able to explain how one's obligations to avoid infection can be limited, given that other persons have opportunities and responsibilities to protect themselves, in the end requires precautions that raise the over‐demandingness problem. (shrink)

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. (shrink)

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. (shrink)

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 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. (shrink)

In this article, we argue that apart from evaluating the causes and the social determinants of health inequalities, an evaluation of the effects of health inequalities is due. For this, we propose the ideal of relational equality as an evaluative framework, and test to what extent health inequalities threaten this ideal of a society of equals. We identify three ways in which they do and argue that these risks are especially great for those lower down the socio-economic strata. We thus (...) conclude that equality in health is instrumental to social justice, and that socio-economic inequalities in health are not only unjust due to their causes but also due to their consequences. We continue to argue that our instrumental approach opens a perspective to mitigate the identified injustices by changing society, rather than reducing inequalities in health, and argue that this is an advantage in the light of the realistic assumption that of the socio-economic health inequalities will persist. The article thus offers a complementary approach to both the evaluation and the mitigation of the injustice of socio-economic inequalities in health. (shrink)

The American Journal of Bioethics, Volume 12, Issue 2, Page 16-17, February 2012.

Libertarian paternalism involves the idea that it is justified to shape the context in which people make important choices in a way that they are nudged to options that would be better for them, wh...

One of the societal problems in a new influenza pandemic will be how to use the scarce medical resources that are available for prevention and treatment, and what medical, epidemiological and ethical justifications can be given for the choices that have to be made. Many things may become scarce: personal protective equipment, antiviral drugs, hospital beds, mechanical ventilation, vaccination, etc. In this paper I discuss two general ethical principles for priority setting (utility and equity) and explain how these principles will (...) often point in diverging directions. Moreover, each of these principles can be understood in different, again often competing, ways. Notwithstanding these controversies and conflicts, in the context of pandemic response there are at least some points of convergence: several policies can be justified by appeal to different ethical principles and theories. Convergence may be found with respect to a focus on saving the most lives (instead of other aggregative accounts); giving priority antiviral prophylaxis and therapy for life-saving pandemic responders; and, partly depending on epidemiology of the pandemic, to prioritise vaccination of children. Although decision-making about access to intensive care will involve choices with immediate tragic implications, the ethical complexity of these choices is relatively modest (although decisions will not be easy): there are persuasive moral reasons for giving priority to patients who are expected to benefit most within the shortest time. Finally, in the last section I tentatively argue that constraints on people’s freedom, as necessary for an effective public health approach, may support giving somewhat more weight to saving the most lives, than to concerns of equity. (shrink)

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. (shrink)

In his article, ‘Social constructionism and climate science denial’, Hansson claims to present empirical evidence that the cultural theory developed by Dame Mary Douglas, Aaron Wildavsky and ourselves leads to science denial. In this reply, we show that there is no validity to these claims. First, we show that Hansson’s empirical evidence that cultural theory has led to climate science denial falls apart under closer inspection. Contrary to Hansson’s claims, cultural theory has made significant contributions to understanding and addressing climate (...) change. Second, we discuss various features of Douglas’ cultural theory that differentiate it from other constructivist approaches and make it compatible with the scientific method. Thus, we also demonstrate that cultural theory cannot be accused of epistemic relativism. (shrink)

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. (shrink)

BACKGROUND: The availability of costly safety measures against transfusion-transmissible infections forces Western countries to confront difficult ethical questions. How to decide about implementing such measures? When are such decisions justified? As a preliminary to addressing these questions, we assessed which concerns shape actual donor blood safety policymaking in five Western countries. STUDY DESIGN AND METHODS: Our qualitative study involved determining which issues had been discussed in advisory committee meetings and capturing these issues in general categories. Appropriate documents were identified in (...) collaboration with local decision-making experts in Canada, Germany, the Netherlands, the United States, and the United Kingdom. The introduction of hepatitis B virus nucleic acid testing and selected measures against variant Creutzfeldt-Jakob disease, West Nile virus, and Q-fever were chosen as cases representing decision-making on safety measures with high costs and low or uncertain added safety. RESULTS: A broad inventory of concerns was established, including: 1) nine categories of advantages and disadvantages of candidate safety policies; 2) six kinds of difficulties in assessing risks and forecasting the effects of safety policies; 3) 13 decision-making principles; and 4) six kinds of practical barriers hampering the translation of candidate policies into decisions. CONCLUSION: Blood safety policymaking involves a wide variety of competing concerns, and approaches to reconcile these considerations are themselves contested. Developing a systematic decision-making approach requires ethical reflection on, among others, reasonable costs of safety and the value of transparency in public policy. (shrink)

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. (shrink)

Many nursing homes have an influenza vaccination policy in which it is assumed that express (proxy) consent is not necessary. Tacit consent procedures are more efficient if one aims at high vaccination rates. In this paper I focus on incompetent residents and proxy consent. Tacit proxy consent for vaccination implies a deviance of standard proxy consent requirements. I analyse several arguments that may possibly support such a deviance. The primary reason to offer influenza vaccination is that vaccinated persons have a (...) significantly reduced risk of getting the flu. This reason however cannot support the assumption that each nursing home resident is ‘better off ’ if she is vaccinated. Neither can it support tacit proxy consent policies. More promising are arguments that take the collective nature of infectious diseases into account. A potentially strong, but ultimately insufficient, argument for non‐express consent is that vaccination contributes to prevention of harm to others. Other arguments emphasise the importance of group protection: herd immunity. I discuss three collective reasons for aiming at herd immunity: solidarity, a common interest in reducing the risk of illness, and a common interest in the prevention of an influenza outbreak. The latter argument appears to be most important. An outbreak is not just detrimental to the health of residents; it is detrimental to their everyday social life as well. Outbreaks can be seen as a collective evil. My analysis shows that there are valid (though not necessarily sufficient) moral arguments for a tacit proxy consent policy. (shrink)

Introduction It is increasingly considered important that people make an autonomous and informed decision concerning colorectal cancer 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. 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. (shrink)

Due to its emphasis on experiential interests, animal ethics tends to focus on individuals as the sole unit of moral concern. Many issues in animal ethics can be fruitfully analysed in terms of obligations towards individual animals, but some problems require reflection about collective dimensions of animal life in ways that individualist approaches can’t offer. Criticism of the individualist focus in animal ethics is not new; it has been put forward in particular by environmental ethics approaches. However, the latter tend (...) to be so far removed from the concerns of animal ethicists that both groups talk at cross purposes. We think the gap between environmental and animal ethics could be bridged by on the one hand focusing more on the collective dimensions of our concerns with animals - after all, individuals are constituted by the collective of which they are a part - and on the other hand, by showing that moral status can also be attributed to groups in an indirect way, related to the moral status of their individual members. In our paper we explore various ways of conceptualising the moral relevance of collectiveness in animal life. We draw on insights from public health ethics, as this field of inquiry has also developed - at least partly—in response to individualist approaches in human bioethics, creating more room for recognizing the value of population health, interpersonal relations, solidarity, and ways in which a collective is constituted. (shrink)

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. (shrink)

The prescription of growth hormone therapy for children who are not growth hormone deficient is one of the controversies in contemporary paediatric endocrinology. Is it morally appropriate to enhance the growth, by means of medical treatment, of a child wish idiopathic short stature? The medical, moral, and philosophical questions in this area are many. Data on the effects of human growth hormone (hGH) treatment will not on their own provide us with answers, as these effects have to be evaluated from (...) a normative perspective. In this article we consider hGH treatment for children of idiopathic short stature from three normative perspectives: the goals of medicine, the good of the patient, and the public good. We argue that the prevention of psychological and social problems due to short stature (and not merely the enhancement of growth) should be the ultimate goal of medical treatment and research. (shrink)

The rule of rescue holds that special weight should be given to protecting the lives of assignable individuals in need, implying that less weight is given to considerations of cost-effectiveness. This is sometimes invoked as an argument for funding or reimbursing life-saving treatment in public healthcare even if the costs of such treatment are extreme. At first sight one might assume that an individualist approach to ethics—such as Scanlon’s contractualism—would offer a promising route to justification of the rule of rescue. (...) In this chapter I argue that contractualism cannot endorse the rule of rescue, whereas a collectivist approach that appeals to group solidarity would offer support for rescue cases. The argument, however, has its limitations, and though solidarity is of central concern in shaping public healthcare, there are good reasons for not endorsing the rule of rescue as a moral basis for allocating scarce resources in clinical care. (shrink)

Newborn screening consists of taking a few drops of blood from a baby's heel in the first week of life and testing it for a list of disorders. In the United States and most countries in Europe, newborn screening programs began in the 1960s and 1970s with screening for phenylketonuria (PKU), a rare metabolic disease that causes severe and irreversible mental retardation unless treated before problems arise. As knowledge about rare diseases expanded and new screening technologies were introduced—such as the (...) tandem mass spectrometer and high‐performance liquid chromatography—the same blood sample could be used to test for a whole list of disorders. In general, screening programs in most countries have tended to expand, but in different countries they have expanded in different ways. Regulation also varies. In some states, screening is mandatory, whereas in others—Wyoming and Maryland—parents are asked for their informed consent. Germany and France have adopted an explicit informed consent procedure, whereas other European countries have a more informal “opt‐out” procedure that does not require signing an informed consent form. Whether newborn screening requires informed consent is an ongoing issue in bioethics. In this article, we will focus on the tension between informed consent and the problem of compliance in newborn screening. Asking for informed consent—allowing parents to opt out—is often thought to pose a threat to compliance. Building on the work of Onora O'Neill on informed consent and trust, however, as well as on work she coauthored with Neil Manson, we will argue that informed consent procedures may actually help maintain trust in newborn screening and may therefore support compliance. (shrink)

Objectives: Efficient procedures for obtaining informed (proxy) consent may contribute to high influenza vaccination rates in nursing homes. Yet are such procedures justified? This study’s objective was to gain insight in informed consent policies in Dutch nursing homes; to assess how these may affect influenza vaccination rates and to answer the question whether deviating from standard informed consent procedures could be morally justified. Design: A survey among nursing home physicians. Setting & Participants: We sent a questionnaire to all (356) nursing (...) homes in the Netherlands, to be completed by one of the physicians. Results: We received 245 completed questionnaires. As 21 institutions appeared to be closed or merged into other institutions, the response was 73.1% (245/335). Of all respondents 81.9% reported a vaccination rate above 80%. Almost 50% reported a vaccination rate above 90%. Most respondents considered herd immunity to be an important consideration for institutional policy. Freedom of choice for residents was considered important by almost all. Nevertheless, 106 out of 245 respondents follow a tacit consent procedure, according to which vaccination will be administered unless the resident or her proxy refuses. These institutions show significantly higher vaccination rates (p < 0.03). Conclusions: In our discussion we focus on the question whether tacit consent procedures can be morally justifiable. Such procedures assume that vaccination is good for residents either as individuals or as a group. Even though this assumption may be true for most residents, there are good reasons for preferring express consent procedures. (shrink)

Thanks to developments in genomics,dietary recommendations adapted to genetic riskprofiles of individual persons are no longerscience fiction. But what are the consequencesof these diets? An examination of possibleimpacts of genetically tailor-made diets raisesmorally relevant concerns that are analogous to(medical-ethical) considerations aboutscreening and testing. These concerns oftengive rise to applying norms for informedconsent and for the weighing of burdens andbenefits. These diets also have a broaderimpact, especially because food patterns arefull of personal, social and cultural meanings.Diets will change one's food patterns (...) and one'sattitude towards food, and this may implychanges in one's identity. We argue that suchan impact does not necessarily raise moralproblems. Moral concerns are, however, relevantif collective values and shared meanings infood practices are at issue. Therefore, thedevelopment of genetically tailor-made dietsdoes not merely require emphasis on weighingpersonal benefits and burdens and on informedconsent. It also asks for attention to andmoral reflection on the collective valuesinvolved in food practices. (shrink)