Background The European Union aims to optimize patient protection and efficiency of health-care research by harmonizing procedures across Member States. Nonetheless, further improvements are required to increase multicenter research efficiency. We investigated IRB procedures in a large prospective European multicenter study on traumatic brain injury, aiming to inform and stimulate initiatives to improve efficiency. Methods We reviewed relevant documents regarding IRB submission and IRB approval from European neurotrauma centers participating in the Collaborative European NeuroTrauma Effectiveness Research in Traumatic Brain Injury. (...) Documents included detailed information on IRB procedures and the duration from IRB submission until approval. They were translated and analyzed to determine the level of harmonization of IRB procedures within Europe. Results From 18 countries, 66 centers provided the requested documents. The primary IRB review was conducted centrally or locally and primary IRB approval was obtained after one, two or three review rounds with a median duration of respectively 50 and 98 days until primary IRB approval. Additional IRB approval was required in 55% of countries and could increase duration to 535 days. Total duration from submission until required IRB approval was obtained was 114 days and appeared to be shorter after submission to local IRBs compared to central IRBs. Conclusion We found variation in IRB procedures between and within European countries. There were differences in submission and approval requirements, number of review rounds and total duration. Research collaborations could benefit from the implementation of more uniform legislation and regulation while acknowledging local cultural habits and moral values between countries. (shrink)

Nurses find themselves in a unique position - between patient and physicians, and in close proximity to the patient. Moral sensitivity can help nurses to cope with the daily turmoil of demands and opinions while delivering care in concordance with the value system of the patient. This article aims to reconsider the concept of moral sensitivity by discussing the function of emotions in morality. We turn to the ideas of historic and contemporary authors on the function of emotions in morality (...) to expand our understanding of moral sensitivity. Ancient philosophers and contemporary psychologists uphold different strategies on the orientation of morality being (a) personal growth or (b) community living, and the primordial function of (c) reason and (d) emotions in the creation of judgements about good and bad. The theoretical discussion on the function of emotions in morality shows that by focusing on reason alone, one leaves out an essential part of morality. The concept of moral sensitivity should (1) include an initial judgment of good and bad based on emotions, (2) hold the ability to reflect on the initial judgement and the associated emotions, (3) include the ability to understand other stakeholders' perspectives based on the ideal-types and (4) include a personal decision on the right course of action. (shrink)

This paper explores and rehabilitates the value of decisional privacy as a conceptual tool, complementary to informational privacy, for critiquing personalized choice architectures employed by self-tracking technologies. Self-tracking technologies are promoted and used as a means to self-improvement. Based on large aggregates of personal data and the data of other users, self-tracking technologies offer personalized feedback that nudges the user into behavioral change. The real-time personalization of choice architectures requires continuous surveillance and is a very powerful technology, recently coined as (...) “hypernudging.” While users celebrate the increased personalization of their coaching devices, “hypernudging” technologies raise concerns about manipulation. This paper addresses that intuition by claiming that decisional privacy is at stake. It thus counters the trend to solely focus on informational privacy when evaluating information and communication technologies. It proposes that decisional privacy and informational privacy are often part of a mutually reinforcing dynamic. Hypernudging is used as a key example to illustrate that the two dimensions should not be treated separately. Hypernudging self-tracking technologies compromise autonomy because they violate informational and decisional privacy. In order to effectively judge whether technologies that use hypernudges empower users, we need both privacy dimensions as conceptual tools. (shrink)

BackgroundContradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview.MethodsA descriptive qualitative study. The data were collected in the context (...) of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study.ResultsThe interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible.ConclusionThe open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview. (shrink)

This paper critically engages with new self-tracking technologies. In particular, it focuses on a conceptual tension between the idea that disclosing personal information increases one’s autonomy and the idea that informational privacy is a condition for autonomous personhood. I argue that while self-tracking may sometimes prove to be an adequate method to shed light on particular aspects of oneself and can be used to strengthen one’s autonomy, self-tracking technologies often cancel out these benefits by exposing too much about oneself to (...) an unspecified audience, thus undermining the informational privacy boundaries necessary for living an autonomous life. (shrink)

Amsterdam University Press is a leading publisher of academic books, journals and textbooks in the Humanities and Social Sciences. Our aim is to make current research available to scholars, students, innovators, and the general public. AUP stands for scholarly excellence, global presence, and engagement with the international academic community.

After many policy attempts to tackle the persistent rise in the costs of health care, physicians are increasingly seen as potentially effective resource stewards. Frameworks including the quadruple aim, value-based health care and choosing wisely underline the importance of positive engagement of the health care workforce in reinventing the system–paving the way to real affordability by defining the right care. Current programmes focus on educating future doctors to provide ‘high-value, cost-conscious care’ (HVCCC), which proponents believe is the future of sustainable (...) medical practice. Such programmes, which aim to extend population-level allocation concerns to interactions between an individual doctor and patient, have generated lively debates about the ethics of expanding doctors’ professional accountability. To empirically ground this discussion, we conducted a qualitative interview study to examine what happens when resource stewardship responsibilities are extended to the consulting room. Attempts to deliver HVCCC were found to involve inevitable trade-offs between benefits to the individual patient and (social) costs, medical uncertainty and efficiency, and between resource stewardship and trust. Physicians reconcile this by justifying good-value care in terms of what is in the best interest of individual patients–redefining the currency of value from monetary costs to a patient’s quality of life, and cost-conscious care as reflective medical practice. Micro-level resource stewardship thus becomes a matter of working reflexively and reducing wasteful forms of care, rather than of making difficult choices about resource allocation. (shrink)

In this paper we discuss the social and ethical issues that arise as a result of digitization based on six dominant technologies: Internet of Things, robotics, biometrics, persuasive technology, virtual & augmented reality, and digital platforms. We highlight the many developments in the digitizing society that appear to be at odds with six recurring themes revealing from our analysis of the scientific literature on the dominant technologies: privacy, autonomy, security, human dignity, justice, and balance of power. This study shows that (...) the new wave of digitization is putting pressure on these public values. In order to effectively shape the digital society in a socially and ethically responsible way, stakeholders need to have a clear understanding of what such issues might be. Supervision has been developed the most in the areas of privacy and data protection. For other ethical issues concerning digitization such as discrimination, autonomy, human dignity and unequal balance of power, the supervision is not as well organized. (shrink)

In projects concerning big data, ethical questions need to be answered during the design process. In this paper the Value Sensitive Design method is applied in the context of data-driven health services aimed at disease prevention. It shows how Value Sensitive Design, with the use of a moral dialogue and an ethical matrix, can support the identification and operationalization of moral values that are at stake in the design of such services. It also shows that using this method can support (...) meeting the requirements of the General Data Protection Regulation. (shrink)

This research statement presents a roadmap for the ethical evaluation of contact tracing apps. Assuming the possible development of an effective and secure contact tracing app, this roadmap explores three ethical concerns—privacy, data monopolists and coercion- based on three scenarios. The first scenario envisions and critically evaluates an app that is built on the conceptualization of privacy as anonymity and a mere individual right rather than a social value. The second scenario sketches and critically discusses an app that adequately addresses (...) privacy concerns but is facilitated by data monopolists such as Google and Apple. The final scenario discusses the coerced installation and use of a privacy-friendly, independently developed contact tracing app. The main worry is coercion through societal exclusion and limited societal participation. The statement concludes with three suggestions for designing an ethical contact tracing app and a research agenda. (shrink)

In this article, I assess the prospects for the limitarian thesis that someone has too much wealth if they exceed a specific wealth threshold. Limitarianism claims that there are good political and/or ethical reasons to prevent people from having such ‘surplus wealth’, for example, because it has no moral value for the holder or because allowing people to have surplus wealth has less moral value than redistributing it. Drawing on recent literature on distributive justice, I defend two types of limitarian (...) principles of justice. First, limitarian midlevel principles draw on the limitarian thesis to specify normative commitments for guiding institutional design and individual actions. Second, the limitarian presumption draws on that thesis to specify what a just allocation of wealth requires under epistemic constraints. Such a presumption says that without substantive reasons to the contrary, we should regard a distribution as unjust if some people’s wealth exceeds the limitarian threshold. Furthermore, I will argue that we must reject a possible but implausible interpretation of limitarianism as an ideal distributive pattern. Yet both as a midlevel principle and as a presumption, limitarianism can play an important role in theorizing about justice in the real world. (shrink)

A central question in contemporary ethics and political philosophy concerns which entities have moral status. In this article, I provide a detailed analysis of the view that moral status comes in degrees. I argue that degrees of moral status can be specified along two dimensions: (i) the weight of the reason to protect an entity’s morally significant rights and interests; and/or (ii) the rights and interests that are considered morally significant. And I explore some of the complexities that arise when (...) we link degrees of moral status to the weight of reasons to protect bundles and/or the content and size of these bundles, in particular regarding the attribution of moral status to nonparadigmatic entities (e.g. people with severe cognitive disabilities, children, embryos and foetuses, robots, non-human animals, ecosystems, and rivers). (shrink)

In this contribution we will briefly discuss the shareholders' need for social, ethical and environmental information and the efforts of corporations to address this need. Looking at three cases, we will raise some doubt with regard to the adequacy of corporate SEE reporting to meet the needs of shareholders. We will discuss the following three cases: BP's investments in Azerbaijan, Nike's management of its labour conditions, of child labour and security issues, and Monsanto's production of genetically modified seeds.

Carl Knight argues that lexical sufficientarianism, which holds that sufficientarian concerns should have lexical priority over other distributive goals, is ‘excessive’ in many distinct ways and that sufficientarians should either defend weighted sufficientarianism or become prioritarians. In this article, I distinguish three types of weighted sufficientarianism and propose a weighted sufficientarian view that meets the excessiveness objection and is preferable to both Knight’s proposal and prioritarianism. More specifically, I defend a multi-threshold view which gives weighted priority to benefits directly above (...) and below its thresholds, but gives benefits below the lowest threshold lexical priority over benefits above the highest threshold. (shrink)

Despite the prominence of thresholds in theories of distributive justice, there is no general account of what sort of role is played by the idea of a threshold within such theories. This has allowed an ongoing lack of clarity and misunderstanding around views that employ thresholds. In this article, I develop an account of the concept of thresholds in distributive justice. I argue that this concept contains three elements, which threshold views deploy when ranking possible distributions. These elements are (i) (...) the level of the threshold, (ii) what constitutes the value of the threshold, and (iii) how benefits above and below the threshold must be allocated. I highlight three contributions that this particular account of thresholds makes: it clarifies the nature of the shift that occurs at the threshold; it resolves a common misunderstanding about headcount principles; and it shows how the arbitrariness objection can be met. (shrink)

Argument quality has consistently been shown to have strong and lasting persuasive effects. The question is what criteria people use to distinguish strong from weak arguments and how these criteria relate to the ones proposed in normative argumentation theory. In an experiment 235 participants without training in argumentation theory rated the acceptance of 30 claims about the desirability of a consequence that were supported by either an argument from analogy, from authority, or from consequences. The supporting arguments were systematically manipulated (...) to violate argument type specific criteria. Participants proved sensitive to the violation of most, but not all, argument type specific criteria. From a normative perspective these findings suggest that people act in a fairly adequate way. These findings also enable a more precise description of what people may do when critically appraising arguments, which has important implications for the use of argument quality as a methodological tool in persuasion research. (shrink)

Women intimately interact with various medical technologies and prosthetic artifacts in the context of breast cancer. While extensive work has been done on the agency of technological artifacts and how they affect users’ perceptions and experiences, the agency of users is largely taken for granted hitherto. In this article, we explore the agency of four women who engage with breast cancer technologies and artifacts by analyzing their narrative accounts of such engagements. This empirical discussion is framed within the tradition of (...) science and technology studies, philosophy of technological mediation and phenomenology of embodied agency as ‘I can/not’. This approach leads to the conclusions that women’s technologically mediated agencies range from being restricted to extended, take place on different bodily levels, within complex temporal structures, and are determined by certain socio-cultural contexts. Furthermore, it reveals that such agency shaping does not imply a one-way conditioning relationship between technologies and users, but rather involves a reciprocal relationship in which both subject and object are co-constituted. We therefore suggest that the ‘material turn’ in philosophy of technology also needs to take into account technologically mediated, material human beings in order to gain a better understanding of human existence. (shrink)

In this paper, I argue that limitarian policies are a good means to further political equality. Limitarianism, which is a view coined and defended by Robeyns, is a partial view in distributive justice which claims that under non-ideal circumstances it is morally impermissible to be rich. In a recent paper, Volacu and Dumitru level two arguments against Robeyns’ Democratic Argument for limitarianism. The Democratic Argument states that limitarianism is called for given the undermining influence current inequalities in income and wealth (...) have for the value of democracy and political equality. Volacu and Dumitru’s Incentive Objection holds that limitarianism places an excessive and inefficient burden on the rich in ensuring political equality. The Efficacy Objection holds that even if limitarianism limits excessive wealth it still fails to ensure the preservation of political equality. In this paper, I will argue that both of these objections fail, but on separate grounds. I argue that the Incentive objection fails because one could appeal to limitarian policies that are different from the ones discussed by Volacu and Dumitru and which escape the problem of reduced productivity. I argue against the Efficacy Objection that limitarian policies are a partial but highly valuable step towards establishing political equality, and that they can and should complement or be complemented by other strategies. (shrink)

In this article, I assess the prospects for the limitarian thesis that someone has too much wealth if they exceed a specific wealth threshold. Limitarianism claims that there are good political and/or ethical reasons to prevent people from having such ‘surplus wealth’, for example, because it has no moral value for the holder or because allowing people to have surplus wealth has less moral value than redistributing it. Drawing on recent literature on distributive justice, I defend two types of limitarian (...) principles of justice. First, limitarian midlevel principles draw on the limitarian thesis to specify normative commitments for guiding institutional design and individual actions. Second, the limitarian presumption draws on that thesis to specify what a just allocation of wealth requires under epistemic constraints. Such a presumption says that without substantive reasons to the contrary, we should regard a distribution as unjust if some people’s wealth exceeds the limitarian threshold. Furthermore, I will argue that we must reject a possible but implausible interpretation of limitarianism as an ideal distributive pattern. Yet both as a midlevel principle and as a presumption, limitarianism can play an important role in theorizing about justice in the real world. (shrink)

In this article, I propose a novel characterization of sufficientarianism. I argue that sufficientarianism combines three claims: a priority claim that we have non-instrumental reasons to prioritize benefits in certain ranges over benefits in other ranges; a continuum claim that at least two of those ranges are on one continuum; and a deficiency claim that the lower a range on a continuum, the more priority benefits in that range have. This characterization of sufficientarianism sheds new light on two long-standing philosophical (...) debates, namely about the distinctiveness of sufficientarianism as a distributive principle and about the common objections to sufficientarianism. (shrink)

The present study extends the meaningful work and ethics literature by comparing three ethics-related antecedents. The second contribution of this paper is that in using a multi-dimensional MFW construct we offer a more fine-tuned understanding of the impact of ethical antecedents on different dimensions of MFW, such as expressing full potential and integrity with self. Using an international data set from 879 employees and structural equation modelling, we confirmed an updated seven-dimension Comprehensive Meaningful Work Scale. The structural model found that (...) fairness, responsible leadership and worthy work are all significant and positively related to the majority of meaningfulness dimensions. However, different antecedents are related to different dimensions of MFW, showing that a complex and multi-level combination of ethics-related practices are required to cultivate MFW. All relationships were in the expected positive direction except responsible leadership, which was negatively related to the MFW dimension of integrity with self. Across the seven dimensions of MFW, only the dimension ‘Service to Others’ was uniformly not predicted by any antecedent. However, all three antecedents significantly related to important dimensions of MFW not usually measured in the ethics literature, such as ‘Unity with Others’ and ‘Expressing Full Potential’. In addition, we conducted dominance analysis to test the relative importance of the three antecedent across the MFW dimensions, and found that worthy work is the most dominant antecedent, although all three antecedents are the most dominant for at least one MFW dimension—further highlighting the importance of exploring MFW as a multi-dimensional construct. We discuss the implications for MFW theory and practice. (shrink)

The present study extends the meaningful work and ethics literature by comparing three ethics-related antecedents. The second contribution of this paper is that in using a multi-dimensional MFW construct we offer a more fine-tuned understanding of the impact of ethical antecedents on different dimensions of MFW, such as expressing full potential and integrity with self. Using an international data set from 879 employees and structural equation modelling, we confirmed an updated seven-dimension Comprehensive Meaningful Work Scale. The structural model found that (...) fairness, responsible leadership and worthy work are all significant and positively related to the majority of meaningfulness dimensions. However, different antecedents are related to different dimensions of MFW, showing that a complex and multi-level combination of ethics-related practices are required to cultivate MFW. All relationships were in the expected positive direction except responsible leadership, which was negatively related to the MFW dimension of integrity with self. Across the seven dimensions of MFW, only the dimension ‘Service to Others’ was uniformly not predicted by any antecedent. However, all three antecedents significantly related to important dimensions of MFW not usually measured in the ethics literature, such as ‘Unity with Others’ and ‘Expressing Full Potential’. In addition, we conducted dominance analysis to test the relative importance of the three antecedent across the MFW dimensions, and found that worthy work is the most dominant antecedent, although all three antecedents are the most dominant for at least one MFW dimension—further highlighting the importance of exploring MFW as a multi-dimensional construct. We discuss the implications for MFW theory and practice. (shrink)

This paper takes as its point of departure the recent publication of Heidegger’s lecture course Basic Concepts of Aristotelian Philosophy and focuses upon Heidegger’s reading of Aristotle’s concept of pathos. Through a comparative analysis of Aristotle’s concept of pathos and Heidegger’s inventive reading of this concept, I aim to show the strengths and weaknesses of Heidegger’s reading. It is my thesis that Heidegger’s account is extremely rich and innovative as he frees up pathos from the narrow confines of psychology and (...) incidental change and places it squarely into the center of the fundamental changes affecting a living being’s existence; simultaneously, however, Heidegger sometimes overstates the ties that pathos has with other concepts such as ousia and logos and highlights exceptional rather than common meanings of pathos, thereby risking the charge of being unfaithful to Aristotle’s text. (shrink)

The interest in meaningful work has significantly increased over the last two decades. Much of the associated managerial research has focused on researching ways to 'provide and manage meaning' through leadership or organizational culture. This stands in sharp contrast with the literature of the humanities which suggests that meaningfulness does not need to be provided, as the distinct feature of a human being is that he or she has an intrinsic 'will to meaning'. The research that has been done based (...) on the humanistic paradigm has been quite fragmented. This article aims to address these gaps through an action research project that actively involved participants in the process of affirming and uncovering the meaningfulness of their work. Our findings contribute to current organizational scholarship and practice as they enable scholars to clearly distinguish 'meaningful work' from 'the management of meaning', bring together the various sources of meaningful work in one framework and show their relationship with each other, clearly show the importance of engaging with both the inspiration towards the ideal as well as the often less than perfect self and the organizational reality in which meaning gets expressed and contribute to our understanding of how to engage individuals in conversations about meaningful work that are not prescriptive or exclusive, but that also show where meanings are commonly held. (shrink)

(2011). The relationship between first‐year achievement and the pedagogical‐didactical fit between secondary school and university. Educational Studies: Vol. 37, No. 5, pp. 557-568.

Limitarianism holds that there is an upper limit to how many resources, such as wealth and income, people can permissibly have. In this article, I examine the conceptual structure of limitarianism. I focus on the upper limit and the idea that resources above the limit are ‘excess resources’. I distinguish two possible limitarian views about such resources: (i) that excess resources have zero moral value for the holder; and (ii) that excess resources do have moral value for the holder but (...) that their claim to such resources is outweighed by other normative concerns. Moreover, I argue that, depending on the values limitarianism seeks to promote, limitarians should care about the number of people with excess resources or the total amount of excess resources (or both), that they can adopt redistributive measures and/or predistributive measures, and that some versions of limitarianism should take into account the distribution of risk among those above the riches line. (shrink)

Almost everyone believes that freedom from deprivation should have significant weight in specifying what justice between generations requires. Some theorists hold that it should always trump other distributive concerns. Other theorists hold that it should have some but not lexical priority. I argue instead that freedom from deprivation should have lexical priority in some cases, yet weighted priority in others. More specifically, I defend semi-strong sufficientarianism. This view posits a deprivation threshold at which people are free from deprivation, and an (...) affluence threshold at which people can live an affluent life, even though their lives may be even further improved beyond that point. I argue that freedom from deprivation in one generation lexically outweighs providing affluence in another generation; in all other cases, freedom from deprivation does not have lexical priority. (shrink)

This book brings together researchers from a range of disciplines that use diverse methodologies to provide new perspectives and formulate answers to questions about the meaning, means, and contextualisation of expressive performance in music.

Despite the prominence of thresholds and limits in theories of distributive justice, there is no general account of their role within such theories. This has allowed an ongoing lack of clarity and misunderstanding around threshold views in distributive justice. In this thesis, I develop an account of the conceptual structure of such views. Such an account helps understand and characterize threshold views, can subsume what may seem to be different debates about such views under one conceptual header, and can be (...) used to further examine and develop patterns of justice that draw on thresholds. In light of this account, I propose a novel characterization of sufficientarianism which sheds new light on the distinctiveness of sufficientarianism as a distributive principle and on the common objections to sufficientarianism. Moreover, I examine and defend limitarianism, which is the view that people should not have more than a certain amount of wealth. In particular, I argue in favour of limitarianism as a midlevel principle for guiding institutional design and individual actions and, furthermore, as a specification of what a just allocation of wealth requires under epistemic constraints. (shrink)

By drawing on Jean-Luc Nancy’s philosophy of ontological relationality, this article explores what it means to be a ‘we’ in breast cancer. What are the characteristics—the extent and diversity—of couples’ relationally lived experiences of bodily changes in breast cancer? Through analyzing duo interviews with diagnosed women and their partners, four ways of sharing an embodied life are identified. While ‘being different together’, partners have different, albeit connected kinds of experiences of breast cancer. While ‘being there for you’, partners take care (...) of each other in mutually dependent ways. While ‘being reconnected to you’, partners relate to each other through intimacy and sexuality. While ‘being like you’, partners synchronize their embodied daily lives to one another, sometimes up to the point that the self cannot be distinguished from the other anymore. These ways reveal that being a ‘we’ involves complex affective, bodily encounters in which the many fault lines that both separate partners into individual selves and join them together as a unity are continuously reshaped and negotiated. Being a ‘we’ may be understood as something we have to do. Therefore, in being true to the legacy of Nancy, we argue at the end of this article for a sensible praxis of sharing a life and body, particularly in breast cancer. (shrink)

Volume 11, Issue 1, March 2019, Page 61-67.

Sovereignty and strategic autonomy are felt to be at risk today, being threatened by the forces of rising international tensions, disruptive digital transformations and explosive growth of cybersecurity incidents. The combination of AI and cybersecurity is at the sharp edge of this development and raises many ethical questions and dilemmas. In this commentary, I analyse how we can understand the ethics of AI and cybersecurity in relation to sovereignty and strategic autonomy. The analysis is followed by policy recommendations, some of (...) which may appear to be controversial, such as the strategic use of ethics. I conclude with a reflection on underlying concepts as an invitation for further research. The goal is to inspire policy-makers, academics and business strategists in their work, and to be an input for public debate. (shrink)