This book examines the role of new technologies and the way social practices are influenced by them, creating all sorts of new challenges for maintaining a coherent practice without clashed between norms.

Health technology assessment (HTA) is often biased in the sense that it neglects relevant perspectives on the technology in question. To incorporate different perspectives in HTA, we should pursue agreement about what are relevant, plausible, and feasible research questions; interactive technology assessment (iTA) might be suitable for this goal. In this way a kind of procedural ethics is established. Currently, ethics too often is focussed on the application of general principles, which leaves a lot of confusion as to what really (...) is the matter in specific cases; in an iTA clashes of values should not be approached by use of such ethics. Instead, casuistry, as a tool used within the framework of iTA, should help to articulate and clarify what is the matter, as to make room for explication and consensus building. (shrink)

Health technology assessment (HTA) is often biased in the sense that it neglects relevant perspectives on the technology in question. To incorporate different perspectives in HTA, we should pursue agreement about what are relevant, plausible, and feasible research questions; interactive technology assessment (iTA) might be suitable for this goal. In this way a kind of procedural ethics is established. Currently, ethics too often is focussed on the application of general principles, which leaves a lot of confusion as to what really (...) is the matter in specific cases; in an iTA clashes of values should not be approached by use of such ethics. Instead, casuistry, as a tool used within the framework of iTA, should help to articulate and clarify what is the matter, as to make room for explication and consensus building. (shrink)

From 1991 to 1994 the Dutch Health Insurance Council financed research on Extracorporeal Membrane Oxygenation (ECMO). This is a technique for providing cardiopulmonary bypass to patients with pulmonary and/or cardiac failure. Most often, these patients are premature neonates. During ECMO, blood is drained from the right atrium, pumped along a membrane where gas exchange takes place, and then redirected to the aorta. To prevent blood clotting, heparin is added. However, with the heparin added, the risk of hemorrhage is considerably increased. (...) Therefore, both the chance of surviving and the chance of severe disability are higher with ECMO than with conventional treatment (i.e., ventilator support). (shrink)

Teaching about technology, at all levels of education, can only be done properly when those who teach have a clear idea about what it is that they teach. In other words: they should be able to give a decent answer to the question: what is technology? In the philosophy of technology that question is explored. Therefore the philosophy of technology is a discipline with a high relevance for those who teach about technology. Literature in this field, though, is not always (...) easy to access for non-philosophers. This book provides an introduction to the philosophy of technology for such people. It offers a survey of the current state-of-affairs in the philosophy of technology, and also discusses the relevance of that for teaching about technology. The book can be used in introductory courses on the philosophy of technology in teacher education programs, engineering education programs, and by individual educators that are interested in the intriguing phenomenon of technology that is so important in our contemporary society. (shrink)

ABSTRACT In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This ‘empirical turn’ is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of the moral (...) experiences of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions? In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self‐justification and bias and can increase the credibility of the RE reached. (shrink)

The introduction of genomics and biobanking methodologies to the African research context has also introduced novel ways of doing science, based on values of sharing and reuse of data and samples. This shift raises ethical challenges that need to be considered when research is reviewed by ethics committees, relating for instance to broad consent, the feedback of individual genetic findings, and regulation of secondary sample access and use. Yet existing ethics guidelines and regulations in Africa do not successfully regulate research (...) based on sharing, causing confusion about what is allowed, where and when. In order to understand better the ethics regulatory landscape around genomic research and biobanking, we conducted a comprehensive analysis of existing ethics guidelines, policies and other similar sources. We sourced 30 ethics regulatory documents from 22 African countries. We used software that assists with qualitative data analysis to conduct a thematic analysis of these documents. Surprisingly considering how contentious broad consent is in Africa, we found that most countries allow the use of this consent model, with its use banned in only three of the countries we investigated. In a likely response to fears about exploitation, the export of samples outside of the continent is strictly regulated, sometimes in conjunction with regulations around international collaboration. We also found that whilst an essential and critical component of ensuring ethical best practice in genomics research relates to the governance framework that accompanies sample and data sharing, this was most sparingly covered in the guidelines. There is a need for ethics guidelines in African countries to be adapted to the changing science policy landscape, which increasingly supports principles of openness, storage, sharing and secondary use. Current guidelines are not pertinent to the ethical challenges that such a new orientation raises, and therefore fail to provide accurate guidance to ethics committees and researchers. (shrink)

In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This ‘empirical turn’ is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of the moral experiences (...) of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions?In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self‐justification and bias and can increase the credibility of the RE reached. (shrink)

If religion once seemed to have played out its role in the intellectual and political history of Western secular modernity, it has now returned with a vengeance. In this engaging study, Hent de Vries argues that a turn to religion discernible in recent philosophy anticipates and accompanies this development in the contemporary world. Though the book reaches back to Immanuel Kant, Martin Heidegger, and earlier, it takes its inspiration from the tradition of French phenomenology, notably Emmanuel Levinas, Jean-Luc Marion, (...) and, especially, Jacques Derrida. Tracing how Derrida probes the discourse on religion, its metaphysical presuppositions, and its transformations, de Vries shows how this author consistently foregrounds the unexpected alliances between a radical interrogation of the history of Western philosophy and the religious inheritance from which that philosophy has increasingly sought to set itself apart. De Vries goes beyond formal analogies between the textual practices of deconstruction and so-called negative theology to address the necessity for a philosophical thinking that situates itself at once close to and at the farthest remove from traditional manifestations of the religious and the theological. This paradox is captured in the phrase adieu ( à dieu ), borrowed from Levinas, which signals at once a turn toward and a leave-taking from God -- and which also gestures toward and departs from the other of this divine other, the possibility of radical evil. Only by confronting such uncanny and difficult figures, de Vries claims, can one begin to think and act upon the ethical and political imperatives of our day. (shrink)

Unearthing the radical potential at the heart of canonical political thought, this book uses the work of Foucault and Deleuze to re-imagine theory in a way that embraces difference and resistance.

Concepts for sustainable bioeconomy systems are gradually replacing the ones on linear product chains. The reason is that continuously expanding linear chain activities are considered to contribute to climate change, reduced biodiversity, over-exploitation of resources, food insecurity, and the double burden of disease. Are sustainable bioeconomy systems a guarantee for a healthy planet? If yes, why, when, and how? In literature, different sustainability indicators have been presented to shed light on this complicated question. Due to high degrees of complexity and (...) interactions of actors in bioeconomy systems, trade-offs and non-linear outcomes became apparent. This fueled the debates about the normative dimensions of the bioeconomy. In particular, the behavior of actors and the utilization of products do not seem to be harmonized according to the environmental, social, and economic pillars of sustainability. Potential conflicts require a new conceptual framework that is here introduced. It consists of a ‘sustainability’ cylinder captured between an inner-cylinder, representing order, and an outer-cylinder for chaos, based on the laws of physics and complex adaptive systems. Such a framework permits (bioeconomy) systems to propagate in the sustainability zone only if they follow helical pathways serving as the new norms. Helices are a combination of two sinusoidal patterns. The first represents here the sustainable behavior of interacting actors and the second the balanced usage of resources and products. The latter counteracts current growth discourses. The applicability of the conceptual cylinder framework is positively verified via 9 cases in Europe, which encompass social-organizational and product-technological innovations. –. (shrink)

This article offers a critical examination of the arguments that underpin Slavoj Žižek's political utopianism. It maintains that Žižek's rejection of liberal democracy and market capitalism is sustained by highly problematical rhetorical strategies and that his purportedly Marxist plea for a new social order is based on an essentially Romantic, more specifically Nietzschean, conception of modern man's existential predicament.

Modern bioethics was born in the West and thus reflects, not surprisingly, the traditions of Western moral philosophy and political and social theory. When the work of bioethics was confined to the West, this background of socio-political theory and moral tradition posed few problems, but as bioethics has moved into other cultures – inside and outside of the Western world – it has become an agent of moral imperialism. We describe the moral imperialism of bioethics, discuss its dangers, and suggest (...) that global bioethics will succeed only to the extent that it is local. (shrink)

Okay, Professor Turner is not Rodney King. He is not responding to bioethicists and social scientists running amuck, setting automobiles aflame, and pelting each other with rocks and broken bottles. He does not come right out and ask, “Why can't we all just get along?” But in its academic way, Turner's essay is an effort to negotiate a truce in the interdisciplinary squabbles that plague bioethics, a plea to move bioethics beyond the “misleading” and “unhelpful” “demarcation of disciplinary goals” that (...) leads to “dichotomous thinking” and “polemical accusations.”. (shrink)

The field of bioethics continues to struggle with the problem of cultural diversity: can universal principles guide ethical decision making, regardless of the culture in which those decisions take place? Or should bioethical principles be derived from the moral traditions of local cultures? Ten Have and Gordijn and Bracanovic defend the universalist position, arguing that respect for cultural diversity in matters ethical will lead to a dangerous cultural relativity where vulnerable patients and research subjects will be harmed. We challenge the (...) premises of moral universalism, showing how this approach imports and imposes moral notions of Western society and leads to harm in non-western cultures. (shrink)

The COVID-19 pandemic has had a devastating impact on care homes in the United Kingdom, particularly for those residents living with dementia. The impetus for this article comes from a recent review conducted by the authors. That review, a qualitative media analysis of news and academic articles published during the first few months of the outbreak, identified ethical care as a key theme warranting further investigation within the context of the crisis. To explore ethical care further, a set of salient (...) ethical values for delivering care to care home residents living with dementia during the pandemic was derived from a synthesis of relevant ethical standards, codes and philosophical approaches. The ethical values identified were caring, non-maleficence, beneficence, procedural justice, dignity in death and dying, well-being, safety, and personhood. Using these ethical values as a framework, alongside examples from contemporaneous media and academic sources, this article discusses the delivery of ethical care to care home residents with dementia within the context of COVID-19. The analysis identifies positive examples of ethical values displayed by care home staff, care sector organisations, healthcare professionals and third sector advocacy organisations. However, concerns relating to the death rates, dignity, safety, well-being and personhood – of residents and staff – are also evident. These shortcomings are attributable to negligent government strategy, which resulted in delayed guidance, lack of resources and Personal Protective Equipment, unclear data, and inconsistent testing. Consequently, this review demonstrates the ways in which care homes are underfunded, under resourced and undervalued. (shrink)

How do bioethics gatekeepers located in wealthy nations treat bioethics workers from developing countries? Can the policies of leading international bioethics journals—based on a concern for profit that effectively restricts access for most researchers from developing countries—be ethically justified? We examined these policies focusing on the way they influence the ability of researchers in resource-poor countries to participate in the development of the field of bioethics. Eight of the fourteen leading bioethics journals are published by three transnational publishing houses, all (...) of which are based in wealthy nations. None of these eight journals participates in the Health InterNetwork Access to Research Initiative of the World Health Organization, a program that provides free or very low-cost online access to the major journals by researchers in developing countries. Lack of access to these essential resources makes it extremely difficult, if not impossible, for bioethicists in developing countries to learn from, and engage in, the global bioethics dialogue. Thus, exclusionary practices of leading bioethics journals sustain the hegemony of Western bioethics, raising serious questions about professed aspirations to create a truly “global” bioethics. This phenomenon indicates lack of empathy and moral imagination of bioethicists in developed countries, raises serious questions about the ethics of bioethics, and highlights the urgent need for creative solutions to remedy this social injustice. (shrink)

The silencing of the epistemologies, theories, principles, values, concepts and experiences of the global South constitutes a particularly egregious epistemic injustice in bioethics. Our shared responsibility to rectify that injustice should be at the top of the ethics agenda. That it is not, or only is in part, is deeply problematic and endangers the credibility of the entire field. As a first step towards reorienting the field, this paper offers a comprehensive account of epistemic justice for global health ethics. We (...) first introduce several different conceptions of justice and decolonisation in relation to knowledge, purposefully drawing on work emanating from the global South as well as the global North. We then apply those conceptions to the global health ethics context to generate a tripartite account of the layers of epistemic justice in the field: who is producing ethics knowledge; what theories and concepts are being applied to produce ethics knowledge; and whose voices are sought, recorded and used to generate ethics knowledge. These layers reflect that the field spans conceptual and empirical research. We conclude by proposing that, going forward, three avenues are key to achieve greater epistemic justice at each layer and to help decolonise global health ethics: namely, understanding the problem, dialogue and structural change. (shrink)

Cell line immortalisation is a growing component of African genomics research and biobanking. However, little is known about the factors influencing consent to cell line creation and immortalisation in African research settings. We contribute to addressing this gap by exploring three questions in a sample of Xhosa participants recruited for a South African psychiatric genomics study: First, what proportion of participants consented to cell line storage? Second, what were predictors of this consent? Third, what questions were raised by participants during (...) this consent process? 760 Xhose people with schizophrenia and 760 controls were matched to sex, age, level of education and recruitment region. We used descriptive statistics to determine the proportion of participants who consented to cell line creation and immortalization. Logistic regression methods were used to examine the predictors of consent. Reflections from study recruiters were elicited and discussed to identify key questions raised by participants about consent. Approximately 40% of participants consented to cell line storage. The recruiter who sought consent was a strong predictor of participant’s consent. Participants recruited from the South African Eastern Cape, and older participants, were more likely to consent; both these groups were more likely to hold traditional Xhosa values. Neither illness nor education were significant predictors of consent. Key questions raised by participants included two broad themes: clarification of what cell immortalisation means, and issues around individual and community benefit. These findings provide guidance on the proportion of participants likely to consent to cell line immortalisation in genomics research in Africa, and reinforce the important and influential role that study recruiters play during seeking of this consent. Our results reinforce the cultural and contextual factors underpinning consent choices, particularly around sharing and reciprocity. Finally, these results provide support for the growing literature challenging the stigmatizing perception that people with severe mental illness are overly vulnerable as a target group for heath research and specifically genomics studies. (shrink)

Community engagement is gaining prominence in global health research. So far, a philosophical rationale for why researchers should perform community engagement during such research has not been provided by ethics scholars. Its absence means that conducting community engagement is still often viewed as no more than a ‘good idea’ or ‘good practice’ rather than ethically required. In this article, we argue that shared health governance can establish grounds for requiring the engagement of low‐ and middle‐income country (LMIC) community members in (...) global health research, where such research aims to help reduce health disparities. This philosophical basis has important implications for the ethical goals ascribed to engagement and the approach adopted to undertake it. We suggest the ethical goals of engagement in equity‐oriented global health research should include: (a) generating research topics and questions that reflect the key problems disadvantaged groups face in accessing healthcare, services and broader social determinants of health and (b) promoting the translation of research findings into policy and practice in ways that benefit the health of disadvantaged groups. We propose engagement practice should have the following features: deliberation with LMIC community members to make a range of project decisions, beginning with setting research topics and questions; inclusion of members of disadvantaged groups and those with the power to change policy and practice to benefit them; and purposeful structuring of deliberations to minimize the impact of power disparities between LMIC community members. Finally, we reflect on how these features differ from those typical of much current community engagement practice in LMICs. (shrink)

Advances in genetic and genomic research have introduced challenges in obtaining informed consent for research in low and middle-income settings. However, there are only few studies that have explored challenges in obtaining informed consent in genetic and genomic research in Africa and none in South Africa. To start filling this gap, we conducted an empirical study to investigate the efficacy of informed consent procedures for an H3Africa genomic study on Rheumatic Heart Disease at the University of Cape Town in South (...) Africa. The main aim of the study was to understand ethical challenges in obtaining informed consent in the RHDGen study. We used a qualitative study methodology involving in-depth interviews and participant observations. Our study participants were RHDGen cases, healthy controls and research staff involved in the recruitment of RHDGen cases and controls. In total, we conducted 32 in-depth interviews with RHDGen cases and controls, 2 in-depth interviews with research staff and 57 direct observations of the consent procedures of RHDGen cases and controls. The interviews were conducted in English, audio-recorded and transcribed verbatim. Data were analyzed using thematic content analysis. The study was conducted in 3 sites within Cape Town, South Africa. Most healthy controls joined the RHDGen study in order to be screened for rheumatic heart disease. A majority of RHDGen cases decided to join the RHDGen study because of therapeutic misconception. The ethical challenges that impacted on obtaining informed consent in the RHDGen study were complex. In this study, the main challenges were diagnostic misconception among RHDGen controls and therapeutic misconception among RHDGen cases. (shrink)

This article presents the results of a study in The Netherlands among two groups of religious people: i.e., 165 Christian outpatients and 171 parishioners. In this study, we focused on the following main questions. To what degree did these two groups of Christians practice positive religious coping, negative religious coping and receptive coping? What are the relationships between these three coping strategies? To what degree were positive religious, negative religious and receptive coping activities related to the well-being of the respondents? (...) What are the best predictors of well-being: positive religious, negative religious or receptive coping? The results showed that positive religious, negative religious and receptive coping were three independent predictors of well-being, with negative religious coping being the best predictor. (shrink)

BackgroundThe quality of ethics consults is notoriously difficult to measure. Survey-based assessments cannot capture nuances of consultations. To address this gap, we conducted interviews with health professionals who requested ethics consults during the initial phase of the COVID-19 pandemic.MethodHealthcare professionals requesting ethics consultation between March 2020 and May 2020 at a tertiary academic medical centre were eligible to participate. We asked participants to comment on the consults they called and thematically analysed responses to identify features associated with optimal quality consultations.ResultsOf (...) 14 healthcare providers, 8 (57%) were women and professions were as follows: 11 (79%) medical doctors, 1 (7%) social worker, 1 (7%) physician assistant and 1 (7%) nurse practitioner. Two aspects of quality emerged: satisfaction and value. Themes within the domain of satisfaction included: responsiveness of the ethics consultant, willingness to consult, institutional role of the ethics service and identifying areas for improvement. When describing value, respondents spoke of the intrapersonal and interpersonal worth of consultation.ConclusionParticipants were generally satisfied with ethics consultation services, similar to opinions of those found in pre-COVID-19 survey studies. Our qualitative approach allowed for a richer exploration of the value of ethics consultation during the pandemic and has implications for ethics consultation services more broadly. Ethics consultation—emphasising both the process and outcome—created valuable moral spaces, promoting thoughtful and ethical responses to dilemmas in patient care. Future assessments should incorporate patient and family/surrogate perspectives and explore the domain of education as an additional quality measure. (shrink)

Whilst Kolbe and de Melo-Martin (2023) appropriately identify a range of concerns about the validity of existing instruments to measure moral distress, one additional limitation that the authors di...

BackgroundFor many decades, the debate on children’s competence to give informed consent in medical settings concentrated on ethical and legal aspects, with little empirical underpinnings. Recently, data from empirical research became available to advance the discussion. It was shown that children’s competence to consent to clinical research could be accurately assessed by the modified MacArthur Competence Assessment Tool for Clinical Research. Age limits for children to be deemed competent to decide on research participation have been studied: generally children of 11.2 (...) years and above were decision-making competent, while children of 9.6 years and younger were not. Age was pointed out to be the key determining factor in children’s competence. In this article we reflect on policy implications of these findings, considering legal, ethical, developmental and clinical perspectives.DiscussionAlthough assessment of children’s competence has a normative character, ethics, law and clinical practice can benefit from research data. The findings may help to do justice to the capacities children possess and challenges they may face when deciding about treatment and research options. We discuss advantages and drawbacks of standardized competence assessment in children on a case-by-case basis compared to application of a fixed age limit, and conclude that a selective implementation of case-by-case competence assessment in specific populations is preferable. We recommend the implementation of age limits based on empirical evidence. Furthermore, we elaborate on a suitable model for informed consent involving children and parents that would do justice to developmental aspects of children and the specific characteristics of the parent-child dyad.SummaryPrevious research outcomes showed that children’s medical decision-making capacities could be operationalized into a standardized assessment instrument. Recommendations for policies include a dual consent procedure, including both child as well as parents, for children from the age of 12 until they reach majority. For children between 10 and 12 years of age, and in case of children older than 12 years in special research populations of mentally compromised patients, we suggest a case-by-case assessment of children’s competence to consent. Since such a dual consent procedure is fundamentally different from a procedure of parental permission and child assent, and would imply a considerable shift regarding some current legislations, practical implications are elaborated. (shrink)

This article discusses the relation between empirical and normative approaches in bioethics. The issue of dwarf tossing, while admittedly unusual, is chosen as a point of departure because it challenges the reader to look with fresh eyes upon several central bioethical themes, including human dignity, autonomy, and the protection of vulnerable people. After an overview of current approaches to the integration of empirical and normative ethics, we consider five ways that the empirical and normative can be brought together to speak (...) to the problem of dwarf tossing: prescriptive applied ethics, theoretical ethics, critical applied ethics, particularist ethics and integrated empirical ethics. We defend a position of critical applied ethics that allows for a two-way relation between empirical and normative theories. Against efforts fully to integrate the normative and the empirical into one synthesis, we propose that the two should stand in tension and relation to one another. The approach we endorse acknowledges that a social practice can and should be judged both by the gathering of empirical data and by normative ethics. Critical applied ethics uses a five stage process that includes: (a) determination of the problem, (b) description of the problem, (c) empirical study of effects and alternatives, (d) normative weighing and (e) evaluation of the effects of a decision. In each stage, we explore the perspective from both the empirical (sociological) and the normative ethical point of view. We conclude by applying our five-stage critical applied ethics to the example of dwarf tossing. (shrink)

There is growing interest for a communitarian approach to the governance of genomics, and for such governance to be grounded in principles of justice, equity and solidarity. However, there is a near absence of conceptual studies on how communitarian-based principles, or values, may inform, support or guide the governance of genomics research. Given that solidarity is a key principle in Ubuntu, an African communitarian ethic and theory of justice, there is emerging interest about the extent to which Ubuntu could offer (...) guidance for the governance of genomics research in Africa. To this effect, we undertook a conceptual analysis of Ubuntu with the goal of identifying principles that could inform equity-oriented governance of genomics research. Solidarity, reciprocity, open sharing, accountability, mutual trust, deliberative decision-making and inclusivity were identified as core principles that speak directly to the different macro-level ethical issues in genomics research in Africa such as: the exploitation of study populations and African researchers, equitable access and use of genomics data, benefit sharing, the possibility of genomics to widen global health inequities and the fair distribution of resources such as intellectual property and patents. We use the identified the principles to develop ethical guidance for genomics governance in Africa. (shrink)

Humans do two types of actions, polimorphic actions and mimeomorphic actions. The ability to carry out polimorphic actions cannot be mastered outside of socialization. Mimeomorphic actions, however, can be learned in other ways; sometimes, they can be learned away from the context of practice. Polimorphic actions cannot be mimicked by machines, but some mimeomorphic actions can. Other mimeomorphic actions are too complex to mechanize. Actions that cannot be mechanized because they are physically complicated should not be confused with actions that (...) cannot be mechanized because socialization is needed to master them. The analysis has implications for recent debates concerning the differences and similarities between humans and machines. The implica tion of the analysis is that much more can be understood about the relationship between humans and machines if the difference is treated as being a consequence of the unique properties of human societies. In this article, the analysis is applied to cardiac catheteriza tion, pacemaker implantation, simulation of bodies, and work in a medical "SkillsLab.". (shrink)

Since the introduction of the U.S. Sarbanes-Oxley Act in 2002 and several other national corporate governance codes, whistleblowing policies have been implemented in a growing number of companies. Existing research indicates that this type of governance codes has a limited direct effect on ethical or whistleblowing behaviour whereas whistleblowing policies at the corporate level seem to be more effective. Therefore, evidence on the impact of (inter)national corporate governance codes on the content of corporate whistleblowing policies is important to understand their (...) indirect impact on whistleblowing behaviour. This study analyzes the contents of whistleblowing policies, and parts of corporate codes of conduct and codes of ethics, describing such policies of 56 leading European companies. By classifying the contents in seven categories, an exploratory framework was created. General contents often identified were: applicability to all employees, a group-wide scope and an authoritative tone. The most common general violations to report were breaches of internal policies and external regulations or laws. The more specific violations most frequently mentioned were criminal offences and dangers to health and safety or the environment. Contacts to report to were the direct or indirect supervisors, a compliance officer or a confidential "hotline" facility. A confidentiality guarantee was common and anonymous reporting was often possible, though sometimes discouraged. Protection against retaliation is stated by ensuring that retaliation will not happen, prohibiting it or making it punishable. The requirement of good faith was frequently given. Finally, investigation of the report was often guaranteed. Surprisingly little information is given on the treatment of whistleblowers reporting an unfounded complaint in good faith, or reporting a violation they were involved in. The study's findings are most relevant to companies without a whistleblowing policy or those that intend to benchmark their policies, and to pan-European standard setters. (shrink)

*Work on this paper was funded in part by NIH grant K01-AT00054, National Center for Complementary and Alternative Medicine. Know then thyself, presume not God to scan The proper study of mankind i...

ABSTRACT Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics (...) committee members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants’ needs and contextual realities: (1) de-emphasising the role of experts and institutions in the consenting process, (2) clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and (3) more effective support for research participants during and after the study. (shrink)

This study examined the ethical issues experienced by nurses working in a small group of elderly persons’ care settings in the UK, using a survey questionnaire previously used in other countries for examining the cultural aspects of ethical issues. However ‘culture’ relates not only to ethnicity but also the organizational culture in which care is delivered. Nurses working in elderly persons’ care settings described a range of issues faced when caring for elderly terminally ill people, which illustrated the different needs (...) of patients, relatives, professionals and society. These issues related to the unique needs of elderly people (such as dementia sufferers) and could have an impact on patients’ quality of death. (shrink)

As one of the most compelling technologies for imaging the brain, functional MRI (fMRI) produces measurements and persuasive pictures of research subjects making cognitive judgments and even reasoning through difficult moral decisions. Even after centuries of studying the link between brain and behavior, this capability presents a number of novel significant questions. For example, what are the implications of biologizing human experience? How might neuroimaging disrupt the mysteries of human nature, spirituality, and personal identity? Rather than waiting for an ethical (...) agenda to emerge from some unpredictable combination of the concerns of ethicists and researchers, the attention of journalists, or after controversy is sparked by research that cannot be retracted, we queried key figures in bioethics and the humanities, neuroscience, media, industry, and patient advocacy in focus groups and interviews. We identified specific ethical, legal and social issues (ELSI) that highlight researcher obligations and the nonclinical impact of the technology at this new frontier. (shrink)