Broad genome-wide testing is increasingly finding its way to the public through the online direct-to-consumer marketing of so-called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision-making with regard to the testing offer, we argue that current (...) practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (shrink)

Broad genome‐wide testing is increasingly finding its way to the public through the online direct‐to‐consumer marketing of so‐called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision‐making with regard to the testing offer, we argue that current (...) practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (shrink)

Irreplicability is framed as crisis, blamed on sloppy science motivated by perverse stimuli in research. Structural changes to the organization of science, targeting sloppy science (e.g., open data, pre‐registration), are proposed to prevent irreplicability. While there is an unquestionable link between sloppy science and failures to replicate/reproduce scientific studies, they are currently conflated. This position can be understood as a result of the erosion of the role of theory in science. The history, sociology, and philosophy of science reveal alternative explanations (...) for irreplicability to show it is part of proper, informative and valuable science. Irreplicability need not equate research waste. Sloppy science is the problem, also when results do replicate. Hence, the solution should focus on opposing sloppy research. (shrink)

Background: As genetics technology proceeds, practices of genetic testing have become more heterogeneous: many different types of tests are finding their way to the public in different settings and for a variety of purposes. This diversification is relevant to the discourse on ethical, legal and societal issues (ELSI) surrounding genetic testing, which must evolve to encompass these differences. One important development is the rise of personal genome testing on the basis of genetic profiling: the testing of multiple genetic variants simultaneously (...) for the prediction of common multifactorial diseases. Currently, an increasing number of companies are offering personal genome tests directly to consumers and are spurring ELSI-discussions, which stand in need of clarification. This paper presents a systematic approach to the ELSI-evaluation of personal genome testing for multifactorial diseases along the lines of its test characteristics.DiscussionThis paper addresses four test characteristics of personal genome testing: its being a non-targeted type of testing, its high analytical validity, low clinical validity and problematic clinical utility. These characteristics raise their own specific ELSI, for example: non-targeted genetic profiling poses serious problems for information provision and informed consent. Questions about the quantity and quality of the necessary information, as well as about moral responsibilities with regard to the provision of information are therefore becoming central themes within ELSI-discussions of personal genome testing. Further, the current low level of clinical validity of genetic profiles raises questions concerning societal risks and regulatory requirements, whereas simultaneously it causes traditional ELSI-issues of clinical genetics, such as psychological and health risks, discrimination, and stigmatization, to lose part of their relevance. Also, classic notions of clinical utility are challenged by the newer notion of 'personal utility.'SummaryConsideration of test characteristics is essential to any valuable discourse on the ELSI of personal genome testing for multifactorial diseases. Four key characteristics of the test - targeted/non-targeted testing, analytical validity, clinical validity and clinical utility - together determine the applicability and the relevance of ELSI to specific tests. The paper identifies and discusses four areas of interest for the ELSI-debate on personal genome testing: informational problems, risks, regulatory issues, and the notion of personal utility. (shrink)

The notion of “responsible luxury” may appear as a contradiction in terms. This article investigates the influence of two defining characteristics of luxury products—scarcity and ephemerality—on consumers’ perception of the fit between luxury and corporate social responsibility (CSR), as well as how this perceived fit affects consumers’ attitudes toward luxury products. A field experiment reveals that ephemerality moderates the positive impact of scarcity on consumers’ perception of fit between luxury and CSR. When luxury products are enduring (e.g., jewelry), a scarce (...) product is perceived as more socially responsible than a more widely available one and provokes positive attitudes. However, this effect does not appear for ephemeral luxury products (e.g., clothing). The perceived fit between luxury and CSR mediates the combined effects of scarcity and ephemerality on consumers’ attitudes toward luxury products. This study provides valuable insights that luxury brand managers can use to design their CSR and marketing strategies. (shrink)

The use of coercive measures in the care for the addicted has changed over the past 20 years. Laws that have adopted the “dangerousness” criterion in order to secure patients’ rights to non-intervention are increasingly subjected to critique as many authors plead for wider dangerousness criteria. One of the most salient moral issues at stake is whether addicts who are at risk of causing danger to themselves should be involuntarily admitted and/or treated. In this article, it is argued that the (...) dilemma between coercion on the one hand and abandonment on the other cannot be analysed without differentiated perspectives on the key notions that are used in these debates. The ambiguity these notions carry within care practice indicates that the conflict between the prevention of danger and respect for autonomy is not as sharp as the legal systems seem to imply. Some coercive measures need not be interpreted as an infringement of autonomy—rather, they should be interpreted as a way to provide good care. (shrink)

IntroductionAcademic integrity policy that is inaccessible, ambiguous or confusing is likely to result in inconsistent policy enactment. Additionally, policy analysis and development are often undertaken as top down processes requiring passive acceptance by users of policy that has been developed outside the context in which it is enacted. Both these factors can result in poor policy uptake, particularly where policy users are overworked, intellectually critical and capable, not prone to passive acceptance and hold valuable grass roots intelligence about policy enactment.Case (...) descriptionThe case study presented in this paper describes the actions of a community of practice at a regional Australian university to deconstruct and translate ambiguous academic integrity policy into a suite of accessible academic integrity resources that were intelligible to staff and students, and which assisted academic staff to consistently enact policy. The paper narrates the formation of the CoP, the tangible and intangible value it created, the social learning practices enacted by its members, its grassroots policy work and the material resources produced from that work.Discussion and evaluationAn evaluation of the CoP was conducted using a value creation framework to explore its immediate value, potential value, applied value, realised value, and reframing value. These values were considered at each stages of the CoP’s lifespan. The evaluation was a useful process that demonstrated the wide-ranging value created by the CoP. Six insights were drawn from the evaluation which promote understanding of the value created for a university by a CoP, particularly in contributing to academic integrity culture over a sustained period of time.ConclusionsThis paper contributes to a research gap on specific examples of discretion within rule-based systems. It illustrates how academics and members of the CoP used their discretion to interpret and enact academic integrity policy within a higher education setting. Drawing from the evaluation of the CoP we argue for greater understanding of the grass-roots contribution of academic and professional staff to academic integrity policy translation and enactment. (shrink)

Despite government policy and initiatives for remote areas, indigenous people are amongst the most disadvantaged and do exhibit higher levels of unemployment in the Australian community. A number of commentators have suggested that better educational opportunities for this minority group will considerably improve their socio-economic status and employment opportunities. This myth is exposed in this article, which reports evidence from an educational–vocational programme for Yolngu who are the indigenous people of East Arnhem Land in the Northern Territory of Australia. The (...) Arnhem Learning Education and Regional Training programme is conducted, mainly at Nhunlunbuy, in partnership with Rio Tinto Alcan and the Charles Darwin University, with the primary objective of preparing indigenous people for mainstream sustainable jobs. The presented content suggests that while higher educational status is important, this sole strategy is unlikely to comprehensively address outstanding issues that are confronting indigenous people and their labour market concerns. (shrink)

In this paper, we explore the role of reciprocity in the employment of restrictive measures in contexts of contagion. Reciprocity should be understood as a substantive value that governs the use, level and extent of restrictive measures. We also argue that independent of the role reciprocity plays in the legitimisation the use of restrictive measures, reciprocity can also motivate support and compliance with legitimate restrictive measures. The importance of reciprocity has implications for how restrictive measures should be undertaken when preparing (...) and evaluating public health responses to contagion. (shrink)

The aim of this research was to gain insight into the experiences and perspectives of individual members of a Medical Research Ethics Committee regarding their individual roles and possible tensions within and between these roles. We conducted a qualitative interview study among members of a large MREC, supplemented by a focus group meeting. Respondents distinguish five roles: protector, facilitator, educator, advisor and assessor. Central to the role of protector is securing valid informed consent and a proper risk-benefit analysis. The role (...) of facilitator implies that respondents want to think along with and assist researchers in order to help medical science progress. As educators, the respondents want to raise ethical and methodological awareness of researchers. The role of advisor implies that respondents bring in their own expertise. The role of assessor points to contributing to the overall evaluation of the research proposal. Various tensions were identified within and between roles. Within the role of protector, a tension is experienced between paternalism and autonomy. Between the role of protector and facilitator tensions occur when the value of a study is questioned while risks and burdens for the subjects are negligible. Within the role of assessor, a tension is felt between the implicit nature of judgments and the need for more explicit formulations. Awareness of various roles and responsibilities may prevent one-sided views on MREC work, not only by members themselves, but also by researchers. Tensions within and between the roles require reflection by MREC members. (shrink)

The aim of this research was to gain insight into the experiences and perspectives of individual members of a Medical Research Ethics Committee regarding their individual roles and possible tensions within and between these roles. We conducted a qualitative interview study among members of a large MREC, supplemented by a focus group meeting. Respondents distinguish five roles: protector, facilitator, educator, advisor and assessor. Central to the role of protector is securing valid informed consent and a proper risk-benefit analysis. The role (...) of facilitator implies that respondents want to think along with and assist researchers in order to help medical science progress. As educators, the respondents want to raise ethical and methodological awareness of researchers. The role of advisor implies that respondents bring in their own expertise. The role of assessor points to contributing to the overall evaluation of the research proposal. Various tensions were identified within and between roles. Within the role of protector, a tension is experienced between paternalism and autonomy. Between the role of protector and facilitator tensions occur when the value of a study is questioned while risks and burdens for the subjects are negligible. Within the role of assessor, a tension is felt between the implicit nature of judgments and the need for more explicit formulations. Awareness of various roles and responsibilities may prevent one-sided views on MREC work, not only by members themselves, but also by researchers. Tensions within and between the roles require reflection by MREC members. (shrink)

The main premise of the Royal Dutch Medical Association's (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guideline's argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guideline's main premise, which entails that palliative sedation is normal medical treatment. After this, we will critically discuss three crucial propositions of (...) the guideline that are used to support this premise: (1) the patient's life expectancy should not exceed 2 weeks; (2) the aim of the physician should be to relieve suffering and (3) expert consultation is optional. We will conclude that, if inherent problematic aspects of palliative sedation are taken seriously, palliative sedation is less normal than it is now depicted in the guideline. (shrink)

In what constitutes the only English-language collection of essays ever dedicated to the analysis of Montesquieu's contributions to political science, the contributors review some of the most vexing controversies that have arisen in the interpretation of Montesquieu's thought. By paying careful attention to the historical, political, and philosophical contexts of Montesquieu's ideas, the contributors provide fresh readings of The Spirit of Laws, clarify the goals and ambitions of its author, and point out the pertinence of his thinking to the problems (...) of our world today. (shrink)

This contribution is a report of a two months' participant observation in a Dutch hospice. The goal of the observation was to gain an overview of moral decisions in a hospice in which euthanasia, a tolerated practice in the Netherlands, is not accepted as an option. In an introduction, the development of palliative care in the Netherlands will be briefly presented. Subsequently, various moral decisions that were taken during the participant observation are presented and analysed by means of case reports. (...) Attention is especially drawn to decisions that directly or indirectly relate to euthanasia. These moral decisions will be clarified in the light of the philosophy behind the concept of palliative care as it has evolved since the foundation of St Christopher's Hospice, London in 1967. (shrink)

Jules Janssens a construit une œuvre importante, qui, pour de nombreux chercheurs, a ouvert des perspectives de recherches nouvelles et fécondes. Ses travaux ont fait date. Ils portent principalement sur la philosophie d'Avicenne, ses sources, ses rapports avec la pensée musulmane, son influence sur la théologie ash'arite (al-Ghazālī, Fakhr al-Dīn al-Rāzī) et sa réception dans le monde latin. Pour lui rendre hommage, quatorze collègues et amis de renommée internationale se sont réunis pour poursuivre ses réflexions sur ces thèmes. L'ouvrage (...) qui en est issu offre un état des lieux de la recherche contemporaine sur Avicenne et sa postérité arabo-latine. (shrink)

Many older people in western countries express a desire to live independently and stay in control of their lives for as long as possible in spite of the afflictions that may accompany old age. Consequently, older people require care at home and additional support. In some care situations, tension and ambiguity may arise between professionals and clients whose views on risk prevention or health promotion may differ. Following Antonovsky’s salutogenic framework, different perspectives between professionals and clients on the pathways that (...) lead to health promotion might lead to mechanisms that explain the origin of these tensions and how they may ultimately lead to reduced responsiveness of older clients to engage in care. This is illustrated with a case study of an older woman living in the community, Mrs Jansen, and her health and social care professionals. The study shows that despite good intentions, engagement, clear division of tasks and tailored care, the responsiveness to receive care can indeed not always be taken for granted. We conclude that to harmonize differences in perspectives between professionals and older people, attention should be given to the way older people endow meaning to the demanding circumstances they encounter (comprehensibility), their perceived feelings of control (manageability), as well as their motivation to comprehend and manage events (meaningfulness). Therefore, it is important that both clients and professionals have an open mind and attempt to understand each others’ perspective, and have a dialogue with each other, taking the life narrative of clients into account. (shrink)

Liberal societies conventionally treat religion as unique under the law, requiring both special protection and special containment. But recently this idea that religion requires a legal exception has come under fire from those who argue that religion is no different from any other conception of the good, and the state should treat all such conceptions according to principles of neutrality and equal liberty. Cécile Laborde agrees with much of this liberal egalitarian critique, but she argues that a simple analogy between (...) the good and religion misrepresents the complex relationships among religion, law, and the state. Religion serves as more than a statement of belief about what is true, or a code of moral and ethical conduct. It also refers to comprehensive ways of life, political theories of justice, modes of voluntary association, and vulnerable collective identities. Disaggregating religion into its various dimensions, as Laborde does, has two clear advantages. First, it shows greater respect for ethical and social pluralism by ensuring that whatever treatment religion receives from the law, it receives because of features that it shares with nonreligious beliefs, conceptions, and identities. Second, it dispenses with the Western, Christian-inflected conception of religion that liberal political theory relies on, especially in dealing with the issue of separation between religion and state. As a result, Liberalism's Religion offers a novel answer to the question: Can Western theories of secularism and religion be applied more universally in non-Western societies?--. (shrink)

This study was designed to investigate the trust relationship between parents and teachers in first grade. Additional research questions were whether trust was related to ethnicity and reading performance. The five facets of trust; benevolence, reliability, competence, honesty and openness, were measured on a 4-point Likert scale. Reading performance was measured by the three-minute test. Parents were found to have more trust in the reliability, competence and honesty of teachers than teachers in parents. Native-Dutch and immigrant parents have the same (...) trust level towards their children?s teacher. However, teachers reported lower trust levels on all five facets of trust for immigrant parents. Our findings indicated that ethnicity has no influence on parents trust in teachers, but ethnicity may explain teachers? trust in parents. Some support was found for the assumption that teachers? trust plays a role in reading performance. Children were found to have higher reading performance when teachers reported higher trust in the benevolence and openness of parents. (shrink)

The starting point of this paper is the need to promote a people-centred corporate social responsibility framework in a context where many human needs and rights remain unsatisfied and where businesses may have both a positive and a negative impact on the quality of life of human beings today and tomorrow and may even lead to irreversible damage. Our normative definition of CSR is consistent with the criteria established by the EU Commission in 2011. We conceive CSR as a responsibility (...) towards human development in two complementary ways: a holistic responsibility shared by companies together with other actors to safeguard humanity and a direct liability of each company for its impact on stakeholders' capabilities. We apply Nussbaum's list of central capabilities and concept of thresholds to specify the nature and extent of corporate responsibilities towards employees, subcontractors, investors, customers, and humanity as a whole. In addition, we leverage fieldwork in developing and developed countries to analyse the effect of business activities on human capabilities. We demonstrate that by quantifying the impact of businesses' activities on various dimensions of stakeholders' lives, and especially on the most vulnerable ones, these businesses can be held accountable for the negative externalities they produce. (shrink)

The problem of simultaneous measurement of incompatible observables in quantum mechanics is studied on the one hand from the viewpoint of an axiomatic treatment of quantum mechanics and on the other hand starting from a theory of measurement. It is argued that it is precisely such a theory of measurement that should provide a meaning to the axiomatically introduced concepts, especially to the concept of observable. Defining an observable as a class of measurement procedures yielding a certain prescribed result for (...) the probability distribution of the set of values of some quantity (to be described by the set of eigenvalues of some Hermitian operator), this notion is extended to joint probability distributions of incompatible observables. It is shown that such an extension is possible on the basis of a theory of measurement, under the proviso that in simultaneously measuring such observables there is a disturbance of the measurement results of the one observable, caused by the presence of the measuring instrument of the other observable. This has as a consequence that the joint probability distribution cannot obey the marginal distribution laws usually imposed. This result is of great importance in exposing quantum mechanics as an axiomatized theory, since overlooking it seems to prohibit an axiomatic description of simultaneous measurement of incompatible observables by quantum mechanics. (shrink)

The expansion of the older population suggests that there will be significant numbers in need of care and support in their own home environment. Yet, little is known about the kind of situations professionals are faced with and how they intervene in the living environment of older people. Qualitative data were collected over a period of 1.5 years from a multi-disciplinary community-based geriatric team in the Netherlands, and participant observations carried out. Forty-two cases discussed within the team meetings were analysed. (...) Results demonstrate that providing care to older people is a dynamic process and revolves around various paradoxes as experienced by professionals. This is illustrated by presenting three paradoxes that emerged within the data: respecting autonomy versus preserving safety; the care needs of the care recipients versus the capacity of their informal carers to cope; and holding a formal orientation versus a tailored orientation on tasks. Providing care in the home environment of older people requires from professionals a continuous anticipation of (un)expected evolutions in situations of their care recipients. In order to optimally support older people professionals need ‘professional discretion’. They must be supported to systematically reflect on and legitimize their intervention strategies. (shrink)

Background: Discussing treatment risks has become increasingly important in medical communication. Still, despite regulations, physicians must decide how much and what kind of information to present. Objective: To investigate patients’ preference for information about a small risk of a complication of colonoscopy, and whether medical and personal factors contribute to such preference. To propose a disclosure policy related to our results. Design: Vignettes study. Setting: Department of Gastroenterology, Academic Medical Centre, the Netherlands. Patients: 810 consecutive colonoscopy patients. Intervention: A home-sent (...) questionnaire containing three vignettes. Vignettes varied in the indication for colonoscopy, complication severity and level of risk. Patients were invited to indicate their wish to be informed and the importance of such information. In addition, sociodemograhic, illness-related and psychological characteristics were assessed. Main outcome measurements: Wish to be informed and importance of information. Results: Of 810 questionnaires, 68% were returned. Patients generally wished to be informed about low-risk complications, regardless of the indication for colonoscopy or the severity of the complication. The level of risk did matter, though (OR = 2.48, SE = 0.28, p = 0.001). The information was considered less important if done for population screening purposes or diagnosis of colon cancer, if the complication was less severe (bleeding) and if the risk was smaller (0.01% and 0.1%). Patients’ information preference was also related to age, mood and coping style. Limitations: Difficulty of vignettes. Conclusions: Patients generally wish to be informed about all possible risks. However, this might become uninformative. A stepwise approach is suggested. (shrink)

This collection of essays endeavors to generate a dialogue between Eric Voegelin and other prominent twentieth-century thinkers and explore some of the more perplexing issues in contemporary political theory. Each essay rests on the underlying question: is it possible or desirable to construct or discover political foundations without resorting to metaphysical or essentialist constructs? The introduction focuses on the two nineteenth-century thinkers, Nietzsche and Husserl, who have framed the debate about modernity and postmodernity; thereafter, the book examines Voegelin's ideas as (...) compared to those of other twentieth-century thinkers. Discussed within the volume are Levinas and the precedence of ethics, Ricoeur's theory of narrative representation, Deleuze and the philosophy of immanence, Voegelin's relationship to a speech- dimension theory of human behavior, and Patocka's theory of pre- metaphysical transcendence in Socrates. What will impress scholars most about this collection is the provocative dialogue created between Voegelin and other major thinkers of postmodernism that addresses the issue of establishing foundations without foundationalism. (shrink)

Although managers must stay abreast of all socictal concerns in developing organizational objectives, protecting the environment seems to be a major issue for consumers in the 1990s. This increased environmental concern leaves managers no choice but to go beyond mere social obligation when it comes to protecting the environment. Society is demanding social responsiveness at a minimum, and the call for social responsibility seems to be getting louder and clearer. This paper reviews the response business has made to this call (...) for responsibility for the environment. Specifically, this paper will address the impact of increased business awareness on: (1) the passage of laws and legislation to protect the environment (social obligation); (2) specific organization actions to meet consumer demands (social responsiveness); (3) specific organization endeavors which reflect a sincere attempt to address the environmental issue (social responsibility). An awareness of these activities should aid managers in developing future plans which will allow them to become more responsible for our environment. (shrink)

Cécile Fabre draws back the curtain on the ethics of espionage and counterintelligence. In a book rich with historical examples she argues that spying is only justified to protect against ongoing violations of fundamental rights. Blackmail, bribery, mass surveillance, cyberespionage, treason, and other nefarious activities are considered.