On October 27, 1991, a Jewish woman named Rachel Drouk, a settler in the West Bank, was killed by Palestinian Intifada fighters. Twenty-five women spontaneously gathered at the site of the murder and held a vigil—a vigil that eventually developed into a protest settlement. The women, all of whom were married mothers, presented their initiative in maternal narratives: grounds, motives, and justifications for the act, and targets and anticipations were all related to the practice of care. This article conducts an (...) artificial dialogue between the women's discourse and Ruddick's theory of maternal thinking, enabling deconstruction of the former and a critique of the theory of care. (shrink)

The results of two independent empirical studies with Flemish citizens were combined to address the problem of a short fall of information provision about higher welfare products. The research objectives were (1) to improve our understanding of how citizens conceptualize farm animal welfare, (2) to analyze the variety in the claimed personal relevance of animal welfare in the food purchasing decision process, and (3) to find out people’s needs in relation to product information about animal welfare and the extent to (...) which the current information caters to these needs. The first study consisted of a survey conducted in three consecutive years (2000–2002, n = 521) and was complemented with more recent qualitative data from four focus group discussions (2006, n = 29). Citizens’ conceptualization of farm animal welfare matched reasonably well with those in the scientific literature, although it is clearly influenced by a lower level of practical experience and a higher weight of empathy. In general, respondents indicated that animal welfare was an important product attribute, although it was less important than primary product attributes such as quality, health, and safety. Moral issues, rather than a perception of higher quality, were the main influence on preferences for higher welfare products. At present, higher standards of animal welfare are mostly guaranteed within more general quality assurance schemes. Yet people’s decisions to not choose higher welfare products seems to be related to the perceptual disconnection between eating animal food products and the living producing animals. Respondents generally thought better information provision was required and the present level of provision was strongly criticized. In combination, the findings of both studies help inform the discussion about how citizens can be informed about animal welfare and the preferred content, source, and medium of such information. The paper also provides insights into citizens’ semantic interpretation of the concept of animal welfare (what wordings they use) and the range of relevance that animal welfare has for different groups that, in turn is useful in identifying which segments can be targeted. This can contribute to a more effective valorization of animal welfare as a product attribute. (shrink)

Based on two case studies of the design of electronic communication networks developed in the public and private sector, this article explores the barriers within current design cultures to account for the needs and diversity of users. Whereas the constraints on user-centered design are usually described in macrosociological terms, in which the user–technology relation is merely understood as a process of the inclusion or exclusion of users in design, the authors suggest that it is important to adopt a semiotic approach. (...) Moreover, they argue that we need to take into account the gender identity of designers to understand how design practices in ICT prioritize male users. The article shows how configuring the user as “everybody” and the use of the “I-methodology” are important constraints in the development of technologies that aim to reach users in all their diversity. (shrink)

As football (soccer) clubs are facing different ethical challenges, many clubs are turning to ethical codes to counteract unethical behaviour. However, both in- and outside the sport field, uncertainty remains about the effectiveness of these ethical codes. For the first time, a longitudinal study design was adopted to evaluate code effectiveness. Specifically, a sample of non-professional football clubs formed the subject of our inquiry. Ethical code effectiveness was assessed by the measurement of the ethical climate. A repeated-measurements ANOVA revealed a (...) positive evolution of the ethical climate within the studied football clubs. This evolution could not be ascribed to the mere presence of an ethical code. However, several potential code effectiveness determining characteristics were also included in the research design. Some of these accounted partly for the evolution of the ethical climate of the football clubs. Results suggest that football clubs should incorporate their ethical code into a broader ethical programme, with attention for professionalization initiatives, stakeholder management, ethical leadership, and whistle-blowing protection. (shrink)

Given the lack of knowledge about safety and efficacy of many treatments for children, pediatric clinical trials are important, but recruitment for pediatric research is difficult. Little is known about children's perspective on participating in trials. The purpose of this study was to understand the experiences and motivations of young people who took part in clinical trials. This is a qualitative interview study of 25 young people aged 10–23 who were invited to take part in clinical trials. Interviews were audio (...) or video recorded and analyzed using framework analysis. Young peoples' motivations were both personal benefit and helping others. Both incentives appeared to be more complex than expected. We introduce the terms “network of exchange” and “intergenerational solidarity” to describe these motivations. To improve recruitment, professionals should be more open about research opportunities, provide better information, and give young people feedback after the trial has ended. (shrink)

Sports organizations face various ethical challenges. To tackle these, ethical codes are becoming increasingly popular instruments. However, a lot of questions remain concerning their effectiveness. There is a particular lack of knowledge when it comes to their form and content, and on the influence of these features on the effectiveness of these codes of ethics. Therefore, we developed a framework to analyze ethical codes and used this to assess codes of ethics in sports clubs from six disciplines. The form and (...) content characteristics of the codes were tested for their impact on the ethical climate of sports clubs. Our results show that most codes focus on the themes of integrity, and on solidarity among the members of sports clubs. Deontological phrasing is dominant in ethical codes in sports clubs. The occurrence of comprehension aids, such as examples, and procedural content, such as the mentioning of sanctions, is low. When it comes to code effectiveness, i.e., the influence on the ethical climate, we see a positive significant effect of the use of consequentialist oriented statements, and of the combination of regulatory and inspirational phrasing. Also the presence of explicit guidelines for the members of the board had a positive significant affect. This shows that codes should be a source of inspiration and stimulate moral awareness, rather than merely guide behavior by simple rules. Other content elements do not influence code effectiveness, suggesting that ethical codes merely have a function of raising ethical awareness in sports clubs. These results help to shed light on what it takes for a code of ethics to become a useful and effective instrument to tackle unethical behavior in sports clubs. (shrink)

As football clubs are facing different ethical challenges, many clubs are turning to ethical codes to counteract unethical behaviour. However, both in- and outside the sport field, uncertainty remains about the effectiveness of these ethical codes. For the first time, a longitudinal study design was adopted to evaluate code effectiveness. Specifically, a sample of non-professional football clubs formed the subject of our inquiry. Ethical code effectiveness was assessed by the measurement of the ethical climate. A repeated-measurements ANOVA revealed a positive (...) evolution of the ethical climate within the studied football clubs. This evolution could not be ascribed to the mere presence of an ethical code. However, several potential code effectiveness determining characteristics were also included in the research design. Some of these accounted partly for the evolution of the ethical climate of the football clubs. Results suggest that football clubs should incorporate their ethical code into a broader ethical programme, with attention for professionalization initiatives, stakeholder management, ethical leadership, and whistle-blowing protection. (shrink)

When talking about decisionmaking for children with a life-threatening condition, the death of children with brain tumors deserves special attention. The last days of the lives of these children can be particularly harsh for bystanders, and raise questions about the suffering of these children themselves. In the Netherlands, these children are part of the group for whom a wide range of end-of-life decisions are discussed, and questions raised. What does the end-of-life for these children look like, and what motivates physicians (...) and parents to make decisions that may affect the life and death of these children? This article highlights the story of the parents of the sisters Roos and Noor. When both their daughters were diagnosed with a hereditary brain tumor, they had to make similar decisions twice. Their story sheds light on the suffering of children in the terminal phase, and how this suffering may motivate parents and physicians to make decisions that influence the end of life of these children’s lives.We argue that complete knowledge about suffering in the terminal phase of children with brain tumors is impossible. However, by collecting experiences like those of Roos and Noor, we can move toward an experienced-based understanding and better guide parents and physicians through these hardest of decisions. (shrink)

Confronted with numerous scandals, sports organizations are turning to the adoption of ethical codes to attain more ethical behavior. However, the effectiveness of an ethical code as a means to increase ethical behavior remains debated; furthermore, the particular characteristics of a sports context have not yet been taken into account, nor have the different stages of code establishment been considered in evaluation. This article studies the effectiveness, as measured by the Ethical Climate Index, of ethical codes in sports organizations. Moreover, (...) it investigates the effects of the presence, creation, content, implementation, and enforcement of ethical codes on ethical behavior in sports organizations. Our results shed a light on the conditions that need to be in place to install an effective ethical code in sports organizations: a genuine motivation to improve ethical behavior, the involvement of coaches, and the explicit targeting of the management. (shrink)

There is much discussion in sports on whether certain behavior should be considered Fair Play. This moral judgment on Fair Play is influenced by the conceptualization of the term Fair Play as either “respect for the rules” or “respect for the spirit of the game,” as well as by other determinants. To uncover the moral judgment of athletes and which conceptualization of Fair Play dominates in practice, a factorial survey approach is used. The act and the level of the match (...) played a role in the judgment, as well as the gender of the athlete. Our results showed that both conceptualizations “respect for the rules” and “respect for the spirit of the game” were important in this judgment, with the spirit conceptualization being more dominant. (shrink)

Digitization and datafication of public space have a significant impact on how cities are developed, governed, perceived and used. As technological developments are based upon political decisions, which impact people’s everyday lives, and from which not everyone benefits or suffers equally, we argue that ‘the smart city’ should be part of continuous public debate; that it should be considered and treated as a social problem. Through nine focus groups, we invited respondents to explore and discuss instances and dilemmas of the (...) smart city. We investigated which interpretative repertoires they used to frame the smart city as a social and actionable problem. Following Blumer's and Gamson's theories on the social construction of problems and on collective action frames, we assessed respondents’ discursive interpretations and their subjective construction of their senses of injustice, agency and identity regarding this subject. We find that – in the context of the city of Rotterdam in The Netherlands – citizens do not experience and consider the smart city as a social and actionable problem. Although they do associate the technological development of smart cities with potential threats, this does not change or constrain their sense of ‘actionability’, nor their behaviour, as they consider themselves to be powerless individuals regarding what, in their eyes, is a complex, elusive and inevitable situation they are confronted with. Strikingly, rather than specifically and contextually reflecting on smart city issues, respondents tended to express their concerns in the more general context of digital and data technologies invading everyday life. (shrink)

Over 90% of the organs transplanted in China before 2010 were procured from prisoners. Although Chinese officials announced in December 2014 that the country would completely cease using organs harvested from prisoners, no regulatory adjustments or changes in China’s organ donation laws followed. As a result, the use of prisoner organs remains legal in China if consent is obtained. We have collected and analysed available evidence on human rights violations in the organ procurement practice in China. We demonstrate that the (...) practice not only violates international ethics standards, it is also associated with a large scale neglect of fundamental human rights. This includes organ procurement without consent from prisoners or their families as well as procurement of organs from incompletely executed, still-living prisoners. The human rights critique of these practices will also address the specific situatedness of prisoners, often conditioned and traumatized by a cascade of human rights abuses in judicial structures. To end the unethical practice and the abuse associated with it, we suggest to inextricably bind the use of human organs procured in the Chinese transplant system to enacting Chinese legislation prohibiting the use of organs from executed prisoners and making explicit rules for law enforcement. Other than that, the international community must cease to abet the continuation of the present system by demanding an authoritative ban on the use of organs from executed Chinese prisoners. (shrink)

When elderly people are ideating on manners to end their lives, because they feel life is over and no longer worth living, it is important to understand their lived experiences, thoughts and behaviour in order to appropriately align care, support and policy to the needs of these people. In the literature, the wish to die in elderly people is often understood from a medical, psychopathological paradigm, referred to as cognitive impairment, depressive disorder, pathological bereavement, and suicidality. In this paper, we (...) evaluate this dominant paradigm by considering three serious limitations, namely: (1) the risk of epistemic transformation; (2) the risk of reduction; and (3) the risk of obscuring the social and cultural embeddedness. Drawing on insights from our empirical–phenomenological research on the issue of elderly and the self-chosen death, this paper argues for a phenomenological perspective to counteract the medicalisation of death wishes in elderly people. (shrink)

Most research reveals that television mainly confirms and re-inforces the existing party-preferences. Despite these findings, public opinion and especially politicians still believe in the direct effect of television on voter-decisions. Same researchers, among whom E. Noelle-Neumann, have given empirical evidence of strong influence of television on voter attitudes hut their findings have been widely contested.In recent years the topic is approached in a different way. The role of television in election campaigns was assessed in a broader context in combination with (...) other social factors and attention was no langer focused on the short term effect. The very high exposure to election programmes on television raises questions of motivation and use : for information, for entertainment, or as by-product of the television attachment. These different motivations imply different uses and consequently different effects, presenting a dillemma for broadcasters and politicians who have to produce programmes for all types of viewers. Many authors claim however that both broadcasters and politicians give in to the spectacular-entertainment side: more exciting debates, more shows, more uniformization of the political message. It should be stressed however, that television being the main source of political communication inelection periods, it can also re-open the issue of participation. Reinforcement of party-preference through television viewing can have a mobilizing effect, as latent party-preference can be turned into manifest voting behaviour.Finally the rules of the publicly controlled broadcasting institutions concerning election campaigns have undoubtedly had an institutional effect ; access and viewing-time are alloted according to the relative strength of political parties. (shrink)

During recent years, the audiovisual landscape in Belgium has been going through a number of drastic changes.The monopoly of the public broadcasting system, standing for over 40 years, was breached. Several hundreds of private radio stations, two new commercial television stations and a number of private local television stations saw the light. The advent of all these newcomers has created a competitive media system. Therivalry between the public broadcasting companies and the commercial stations is very severe and unfortunately the PBS (...) are imitating the commercial model: they sacrifice more time for fiction and entertainment. Moreover, the Belgian media policy is very permissive and favours commercialisation. (shrink)

This article examines the municipal ID card programs in New Haven and San Francisco. With a municipal ID card, undocumented immigrants can access basic city services and identify themselves with police and other city officials. The article draws on twenty-eight interviews with key stakeholders to show that city officials navigated the conflicting demands of ID card supporters and opponents to create a local membership policy focused on improving city administration, not expanding the rights of undocumented immigrants. In capitalizing on their (...) discretionary administrative powers to develop programs that safeguard the health, safety, and welfare of all city residents, officials in New Haven and San Francisco managed to promote the integration of undocumented immigrants into city affairs without upsetting the federal monopoly over immigration and citizenship powers. This new form of local bureaucratic membership has implications for the urban citizenship literature and illustrates that city officials have some freedom to develop programs that benefit undocumented immigrants. (shrink)

ABSTRACTThis article reviews Zhu Xueqin’s writings on Jean-Jacques Rousseau against the background of the reception of Rousseau in China since the late nineteenth century. Rousseau was both an advocate and critic of the Enlightenment, and his work hence appealed to many Chinese intellectuals who struggled with the conundrum of how to modernize. During the late nineteenth century, Chinese supporters of Rousseau drew on his work to defend the viability of revolution. During the 1990s, following the tragedy of Tiananmen and the (...) decline of socialism, Rousseau served to reflect on China’s twentieth-century trajectory and the disastrous political consequences of collective moral idealism. For Zhu Xueqin, a key question was: Why were the French Revolution and the Cultural Revolution so similar? (shrink)

There are no moral cookbooks—no algorithms for whipping up moral confections to suit every occasion. But more modest and flexible tools might still be useful for practical ethics. One team describes how professionals can be taught to use a framework for understanding moral problems.

Asylum-seeking and refugee women (ASRW) are population groups characterized by diverse social, economic and legal backgrounds as well as diverse needs. Their backgrounds of forced migration have a profound impact on their overall health, including their sexual and reproductive health (SRH). In Europe, the SRH needs of ASRW are usually more pressing than those of the host country population. In the context of refugee health, it is important to distinguish between asylum seekers and statutory refugees, as asylum seekers have distinct (...) needs and often limited rights in their host country. Yet both groups face many barriers in accessing national health services. This article addresses the issue of entitlements to health services for asylum-seeking women in Europe, and highlights the wide range of difficulties of both asylum-seeking and refugee women in accessing (sexual and reproductive) health services. (shrink)

With a large number of forcibly displaced people seeking safety, the EU is facing a challenge in maintaining solidarity. Europe has seen millions of asylum seekers crossing European borders, the largest number of asylum seekers since the second world war. Endemic diseases and often failing health systems in their countries of origin, and arduous conditions during transit, raise questions around how to meet the health needs of this vulnerable population on arrival in terms of screening, vaccination, and access to timely (...) and appropriate statutory health services. This paper explores the potential role of the principle of reciprocity, defined as the disposition ‘to return good in proportion to the good we receive, and to make reparations for the harm we have done’, as a mid-level principle in infectious disease screening policies. More than half of the European countries implemented screening programmes for newly arrived asylum seekers. Screening may serve to avoid potential infectious disease risks in the receiving countries as well as help identify health needs of asylum seekers. But screening may infringe upon basic rights of those screened, thus creating an ethical dilemma. The use of the principle of reciprocity can contribute to the identification of potential improvements for current screening programmes and emphasizes the importance of certain rights into guidelines for screening. It may create a two way moral obligation, upon asylum seekers to actively participate in the programme, and upon authorities to reciprocate the asylum seekers’ participation and the benefits for the control of public health. The authors argue that the reciprocity principle leads to a stronger ethical justification of screening programmes and help achieve a balance between justifiable rights claims of the host population and the asylum seekers. The principle deserves a further and more thorough exploration of its potential use in the field of screening, migration and infectious diseases. (shrink)

BackgroundPatient-centeredness, respect for patient autonomy, and shared decision-making have now made it to center stage in discussions on quality of care. Knowing what actually counts in care and how it should be accomplished from the patients’ and nurses’ perspective seems crucial.AimTo explore how patients and their nurses perceive the importance and enactment of values in their healthcare.Research designAn observational, cross-sectional study using a self-developed questionnaire, consisting of 15 items related to seven values (e.g. uniqueness, autonomy, professionalism, compassion, responsiveness, partnership, and (...) empowerment) as described in the taxonomy of Bastemeijer et al.Participants and research contextThe survey was completed by 384 patients and 81 nurses. Participants were recruited on eight internal medicine wards of a 1000-bed university hospital in Belgium.Ethical considerationsThis study was approved by the ethical committee of the Ghent University Hospital (B670201836799).Findings(1) Patients and nurses prioritize values of care differently; (2) nurses report not being able to enact the values they prioritize in actual practice as much as one would like to; and (3) there is a gap in experienced delivery of a comprehensible explanation of all treatment options, a conversation based on equality, making shared decisions, and being non-judgmental between nurses and patients.DiscussionOur findings challenge nurses’ overemphasis on professional compassion and uniqueness while arguing for increased attention on authentic shared decision-making and empowerment. The first step to a patient-centered culture truly involving patients in their healthcare is communication and information provision, rather than focusing on tangible and normative constructs.ConclusionOur findings revealed differences in prioritization and actual enactment of values in care between patients and nurses. This was especially so for values related to communication, provision of complete unbiased information, and shared decision-making. Nurses should prioritize providing comprehensible information and using conversations based on equality to make decision together with patients. (shrink)

Sports organizations face various ethical challenges. To tackle these, ethical codes are becoming increasingly popular instruments. However, a lot of questions remain concerning their effectiveness. There is a particular lack of knowledge when it comes to their form and content, and on the influence of these features on the effectiveness of these codes of ethics. Therefore, we developed a framework to analyze ethical codes and used this to assess codes of ethics in sports clubs from six disciplines. The form and (...) content characteristics of the codes were tested for their impact on the ethical climate of sports clubs. Our results show that most codes focus on the themes of integrity, and on solidarity among the members of sports clubs. Deontological phrasing is dominant in ethical codes in sports clubs. The occurrence of comprehension aids, such as examples, and procedural content, such as the mentioning of sanctions, is low. When it comes to code effectiveness, i.e., the influence on the ethical climate, we see a positive significant effect of the use of consequentialist oriented statements, and of the combination of regulatory and inspirational phrasing. Also the presence of explicit guidelines for the members of the board had a positive significant affect. This shows that codes should be a source of inspiration and stimulate moral awareness, rather than merely guide behavior by simple rules. Other content elements do not influence code effectiveness, suggesting that ethical codes merely have a function of raising ethical awareness in sports clubs. These results help to shed light on what it takes for a code of ethics to become a useful and effective instrument to tackle unethical behavior in sports clubs. (shrink)

Several attempts to conceptualize farm animal welfare have been criticized for diverging reasons, among them often the failure to incorporate the public concern and opinion. This paper’s objective is to develop a conception of farm animal welfare that starts from the public’s perception and integrates the opinion of different stakeholder representatives, thus following a fork-to-farm approach. Four qualitative citizen focus group discussions were used to develop a quantitative questionnaire, which has been completed by a representative sample of Flemish citizens ( (...) n = 459). Exploratory and confirmatory factor analyses were applied to develop a conception of farm animal welfare starting from an extended list of aspects that relate to animal production and associate with farm animal welfare in the public’s perception. In depth interviews with stakeholder representatives were used to match and adapt the structure of the animal welfare conception model. The resulting conception revealed seven dimensions grouped in two different levels. Three dimensions were animal-based: “Suffering and Stress,” “Ability to Engage in Natural Behavior,” and “Animal Health.” Four dimensions were resource-based: “Housing and Barn climate,” “Transport and Slaughter,” “Feed and Water,” and “Human-Animal Relationship.” This conception is distinct from earlier attempts since it is based on public perceptions; it addresses the opinion of different stakeholders, and it distinguishes empirically between animal-based and resource-based dimensions in the conceptualization of farm animal welfare. The relevancy of a popular definition is supported by the present demand oriented economy, in which animal welfare is a non-trade concern, and mainly left to the market where consumers still mainly act as individuals who calculate and weigh pros and cons. (shrink)

BackgroundIn December 2014, China announced that only voluntarily donated organs from citizens would be used for transplantation after January 1, 2015. Many medical professionals worldwide believe that China has stopped using organs from death-row prisoners.DiscussionIn the present article, we briefly review the historical development of organ procurement from death-row prisoners in China and comprehensively analyze the social-political background and the legal basis of the announcement. The announcement was not accompanied by any change in organ sourcing legislations or regulations. As a (...) fact, the use of prisoner organs remains legal in China. Even after January 2015, key Chinese transplant officials have repeatedly stated that death-row prisoners have the same right as regular citizens to “voluntarily donate” organs. This perpetuates an unethical organ procurement system in ongoing violation of international standards.ConclusionsOrgan sourcing from death-row prisoners has not stopped in China. The 2014 announcement refers to the intention to stop the use of organs illegally harvested without the consent of the prisoners. Prisoner organs procured with “consent” are now simply labelled as “voluntarily donations from citizens”. The semantic switch may whitewash sourcing from both death-row prisoners and prisoners of conscience. China can gain credibility only by enacting new legislation prohibiting use of prisoner organs and by making its organ sourcing system open to international inspections. Until international ethical standards are transparently met, sanctions should remain. (shrink)

The paper examines the conditions under which we are responsible for actions performed under duress, focusing on a real case in which a soldier was compelled at gunpoint to participate in the massacre of civilian prisoners. The case stands for a class of cases in which the compelled act is neither clearly justified nor clearly excused on grounds of temporary incapacity, but in which it is nonetheless plausible that the agent is not morally blameworthy. The theoretical challenge is to identify (...) the excuse in such cases and to explain its basis. The paper argues that when mortal duress excuses in cases of this sort, it does so because the compelled act, though impermissible and freely chosen, nonetheless fails to manifest ‘an insufficiently good will’. The argument depends on a potentially controversial thesis in the ethics of concern, namely, that a thoroughly decent moral agent—someone who cares enough about morality and the values that underlie it—will not always be moved to do what he knows he ought to do. (shrink)

ABSTRACT Match-fixing is a major ethical issue in sports. Although research interest in match-fixing has increased in recent years, we remain largely in the dark regarding how both betting- and non-betting-related match-fixing relate to the moral decision-making of those involved. Drawing on Rest’s theory of morality and on the perceptions of a large sample of participants in Flemish sports, this study indicates that most match-fixing incidents are non-betting-related, while moral motivation and associated challenges clearly differ according to the type of (...) match-fixing. Therefore, each type of match-fixing requires different preventive measures. (shrink)

BackgroundHuntington’s disease has a poor prognosis. For HD patients in the Netherlands, one way of dealing with their poor prognosis is by drawing up an advance euthanasia directive. Little is known about the perspectives of HD patients on their AED.AimTo gain insight into patients’ views on and attitudes towards their AED, and changes over time.MethodsA longitudinal qualitative interview study using 1 to 6 semi-structured interviews over a period of maximum three years. Nine HD patients who either had an AED or (...) were thinking about drawing it up participated in this study.ResultsWe identified two themes that characterize patients’ perspectives on their AEDs: general character of the AED; uncertainty around their AED. Ad The conditions that the participants described in their AED were generally not very specific for the person. Mostly they were general notions of unbearable suffering. Familiarity with HD in the family could play a role in drawing up an AED. Ad Participants generally were aware of the tentative character of their AED and could have doubts concerning their own willingness or the willingness of others in the future. Sometimes these doubts were so great, that it prevented them from drawing up an AED. However, patients did not alter their AED during the follow-up period or changed in their view or attitude on their AED.ConclusionHD patients that draw up an AED usually describe general conditions for euthanasia and recognize that these conditions may change as the disease progresses. An AED or the wish to draw one up may be a good conversation starter for conversations about goals and preferences for future care. (shrink)

This paper motivates institutional epistemic trust as an important ethical consideration informing the responsible development and implementation of artificial intelligence (AI) technologies (or AI-inclusivity) in healthcare. Drawing on recent literature on epistemic trust and public trust in science, we start by examining the conditions under which we can have institutional epistemic trust in AI-inclusive healthcare systems and their members as providers of medical information and advice. In particular, we discuss that institutional epistemic trust in AI-inclusive healthcare depends, in part, on (...) the reliability of AI-inclusive medical practices and programs, its knowledge and understanding among different stakeholders involved, its effect on epistemic and communicative duties and burdens on medical professionals and, finally, its interaction and alignment with the public’s ethical values and interests as well as background sociopolitical conditions against which AI-inclusive healthcare systems are embedded. To assess the applicability of these conditions, we explore a recent proposal for AI-inclusivity within the Dutch Newborn Screening Program. In doing so, we illustrate the importance, scope, and potential challenges of fostering and maintaining institutional epistemic trust in a context where generating, assessing, and providing reliable and timely screening results for genetic risk is of high priority. Finally, to motivate the general relevance of our discussion and case study, we end with suggestions for strategies, interventions, and measures for AI-inclusivity in healthcare more widely. (shrink)

BackgroundWith advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands are asked to inform at-risk relatives about the diagnosis. However, previous research has shown that relatives are sometimes not informed due to barriers such as family conflicts. Research on family communication in genetic diseases aims to explore the difficulties encountered in informing relatives and to identify ways to support probands in this.Main bodyResearch on family communication may (...) also reveal that participants did not inform their relatives about the risk of a serious genetic condition, even when preventive and treatment options are available. Researchers may then face a dilemma: Do they need to warn at-risk relatives about the finding? Or do they keep silent due to prior confidentiality agreements with study participants?ConclusionsWe believe that the absolute confidence promised to research participants outweighs the interests of their relatives, even though it can be claimed that relatives at risk of a genetic disease do, in principle, have a right to know information collected about their health. Not respecting confidentiality agreements could cause distrust between researchers and research participants and possibly harm the relationship between probands and relatives. Relatives' health interests can still be taken into account without jeopardizing participant trust, by considering alternative scenarios, including sharing general study findings on the barriers participants experience with their healthcare professionals and by offering participants psychosocial support for family communication. (shrink)