The general and deep dissatisfaction with the present-day status of health care is of such intensity that one speaks of a health care crisis. What is most disturbing to the physicians is that society directs its accusation mainly at the health care professional for being responsible for this crisis. If we want to abolish the crisis we must try to get a renewed look at its source, i.e., to answer the questions where did health care go wrong primarily? and with (...) whom lies the ultimate responsibility for health care?. In the following discourse these questions are discussed. Based on the assumption that every human being is a free rational agent the ultimate health care responsibility is assigned to the citizen. Of course, whether such an approach will in fact solve the problems inherent in present-day health systems cannot be predicted. (shrink)

Recently, the attitude and performance of the physician have been questioned and new codes of medical ethics have been introduced. Any ethics proposed for the future is a scenario reflecting the composer''s selectivity. Envisaged ethics of truthful, non-paternalistic, responsible physician-patient interaction will have far-reaching implications for autopsy, euthanasia, abortion, suicide, genetic engineering, transplantation, clinical trials, status of the psychiatric patient, physician immunity and liability. Conflicts between personal and societal medical ethics may continue to be insoluble. A possible projection of the (...) physician''s ethics on that of the politician is discussed. A new medical ethics should encompass principles of different creeds and be supranational. (shrink)

Background: The banking of biological samples raises a number of ethical issues in relation to the storage,export and re-use of samples. Whilst there is a growing body of literature exploringparticipant perspectives in North America and Europe, hardly any studies have been reportedin Africa. This is problematic in particular in light of the growing amount of research takingplace in Africa, and with the rise of biobanking practices also on the African continent. Inorder to investigate the perspectives of African research participants, we (...) conducted a studywith research participants in a TB study in the Western Cape, South Africa. Methods: Semi-structured interviews were conducted using an interview guide which drew on the mostprominent themes expressed in current literature on sample storage, re-use and exportation.Interviews were conducted in Afrikaans and subsequently translated into English by the sameinterviewer. Interviews were transcribed verbatim and analysed qualitatively. Results: The results of our study indicate that the majority of participants were supportive of givingone-time consent to the storage and re-use of their samples. The concept of research being fora "good cause" was a central prerequisite. Additionally, a significant minority requested thatthey be re-contacted if a future use was not stipulated on the original consent. There was alsoconsiderable variation in how participants understood the concept of a 'good cause', withparticipants describing three distinct categories of research, of which two were generallythought to constitute 'good cause' research. Research that was for-profit was considered tofall outside the spectrum of 'good cause' research. Participants displayed confidence in theabilities of the researchers to make future decisions regarding sample use, but seemedunaware of the role of ethics committees in either this process or more generally. Conclusions: Participants expressed a wide and complex range of views about issues of sample storage andre-use, and they showed a great deal of trust in researchers. Participants' willingness to havetheir samples stored and re-used is consistent with findings from existing studies. However,in contrast to existing literature, participants were generally not in favour of for-profitresearch. Further research needs to be done to explore these ideas in other communities, bothin South Africa and other countries. (shrink)

BackgroundGenome-wide association studies provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia and Oceania.DiscussionWe explore ethical issues (...) in three key areas: protecting the interests of research participants, regulation of international collaborative genomics research and protecting the interests of scientists in low income countries. With regard to participants, important challenges are raised about community consultation and consent. Genomics research raises ethical and governance issues about sample export and ownership, about the use of archived samples and about the complexity of reviewing such large international projects. In the context of protecting the interests of researchers in low income countries, we discuss aspects of data sharing and capacity building that need to be considered for sustainable and mutually beneficial collaborations.SummaryMany ethical issues are raised when genomics research is conducted on populations that are characterised by lower average income and literacy levels, such as the populations included in MalariaGEN. It is important that such issues are appropriately addressed in such research. Our experience suggests that the ethical issues in genomics research can best be identified, analysed and addressed where ethics is embedded in the design and implementation of such research projects. (shrink)

This paper analyses the concept of empirical ethics as well as three meta-ethical fallacies that empirical ethics is said to face: the is-ought problem, the naturalistic fallacy and violation of the fact-value distinction. Moreover, it answers the question of whether empirical ethics (necessarily) commits these three basic meta-ethical fallacies.

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)

The relationship between sociology and bioethics has been an uneasy one. It has been described as contentious and adversarial, and at least some of the sociologists who have ventured into the territory of medical ethics report back on unfriendly natives. This bioethical ill will toward sociology is not without cause. Sociologists have been quite critical of what they call the bioethical project. Two decades ago - when bioethics was just getting up on its organizational feet - Renée Fox and Judith (...) Swazey leveled the charge of cultural myopia against bioethics, noting that this myopia generally manifests itself in the form of systematic inattention to the social and cultural sources and implications of its own thought. They go on to say ifbioethics is an indicator of the general state of American ideas, values, and beliefs, of our collective self knowledge, and our understanding of other societies and cultures - then there is every reason to be worried about who we are, what we have become, and where we are going. (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)

What, at this historical moment "after Auschwitz," still remains of the questions traditionally asked by theology? What now is theology's minimal degree? This magisterial study, the first extended comparison of the writings of Theodor W. Adorno and Emmanuel Levinas, explores remnants and echoes of religious forms in these thinkers' critiques of secular reason, finding in the work of both a "theology in pianissimo" constituted by the trace of a transcendent other. The author analyzes, systematizes, and formalizes this idea of an (...) other of reason. In addition, he frames these thinkers' innovative projects within the arguments of such intellectual heirs as Jürgen Habermas and Jacques Derrida, defending their work against later accusations of "performative contradiction" (by Habermas) or "empiricism" (by Derrida) and in the process casting important new light on those later writers as well. Attentive to rhetorical and rational features of Adorno's and Levinas's texts, his investigations of the concepts of history, subjectivity, and language in their writings provide a radical interpretation of their paradoxical modes of thought and reveal remarkable and hitherto unsuspected parallels between their philosophical methods, parallels that amount to a plausible way of overcoming certain impasses in contemporary philosophical thinking. In Adorno, this takes the form of a dialectical critique of dialectics in Levinas, that of a phenomenological critique of phenomenology, each of which sheds new light on ancient and modern questions of metaphysics, ethics, and aesthetics. For the English-language publication, the author has extensively revised and updated the prize-winning German version. (shrink)

It is commonly assumed that many, if not most, adult children have moral duties to visit their parents when they can do so at reasonable cost. However, whether such duties persist when the parents lose the ability to recognise their children, usually due to dementia, is more controversial. Over 40% of respondents in a public survey from the British Alzheimer’s Society said that it was “pointless” to keep up contact at this stage. Insofar as one cannot be morally required to (...) do pointless things, this would suggest that children are relieved of any duties to visit their parents. In what appears to be the only scholarly treatment of this issue, Claudia Mills has defended this view, arguing that our duties to visit our parents require a type of relationship that is lost when parents no longer remember who their children are. This article challenges Mills’ argument. Not only can children be duty-bound to visit parents who have lost the ability to recognise them, I argue that many children do in fact have such duties. As I show, these duties are grounded in any special interests that their parents have in their company; the fact that visiting their parents might allow them to comply with generic duties of sociability; and/or the fact that such visits allow them to express any gratitude that they owe their parents. (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)

Volume 19, Issue 10, October 2019, Page 40-42.

Scientific interest in genomics in Africa is on the rise with a number of funding initiatives aimed specifically at supporting research in this area. Genomics research on material of African origin raises a number of important ethical issues. A prominent concern relates to sample export, which is increasingly seen by researchers and ethics committees across the continent as being problematic. The concept of genomic sovereignty proposes that unique patterns of genomic variation can be found in human populations, and that these (...) are commercially, scientifically or symbolically valuable and in need of protection against exploitation. Although it is appealing as a response to increasing concerns regarding sample export, there are a number of important conceptual problems relating to the term. It is not clear, for instance, whether it is appropriate that ownership over human genomic samples should rest with national governments. Furthermore, ethnic groups in Africa are frequently spread across multiple nation states, and protection offered in one state may not prevent researchers from accessing the same group elsewhere. Lastly, scientific evidence suggests that the assumption that genomic data is unique for population groups is false. Although the frequency with which particular variants are found can differ between groups, such genes or variants per se are not unique to any population group. In this paper, the authors describe these concerns in detail and argue that the concept of genomic sovereignty alone may not be adequate to protect the genetic resources of people of African descent. (shrink)

Many people want to live in liberal democracies because they are liberal and democratic. Yet it would be mistaken, indeed naive, to assume that this applies to all would-be residents. Just as some inhabitants of liberal democracies oppose one or more fundamental liberal-democratic values and principles, so there are foreign would-be residents who do so, who might include individuals with e.g. Jihadist, Neo-Nazi, and radical anarchist views. Proceeding on the assumption that there exists no unconditional moral right to immigrate, this (...) article asks whether it is ever morally permissible for liberal democracies to deny residence to nonnationals based on evidence that theypersonallyhold extremist views. I argue that this is sometimes the case. Specifically, my contention is that even if we adopt a cosmopolitan perspective on which states are not allowed to prioritise the interests of their own citizens and residents over those of foreign nonresidents, there are two conditions under which such exclusions are justified even when refugees are being refused admission. (shrink)

Many political theorists are multiculturalists. They believe that states ought to support and accommodate minority cultures, even if they disagree about when such support and accommodations are due and what forms they should take. In this contribution, I argue that multiculturalists have failed to notice an important objection against a wide range of multiculturalism policies. This objection is predicated on the notion that when states support and accommodate minority cultures, they should support and accommodate many subcultures and individualistic conceptions of (...) the good as well. However, since a significant proportion of multiculturalism policies imposes financial costs on society, it will often be prohibitively expensive for states to support and accommodate citizens’ subcultures and individualistic conceptions of the good on an equal basis. The result is that implementing such policies is likely to end up discriminating against certain groups, which might include e.g. fervent football fans, globe-trotters, mountain climbers, motor bikers, Hippies, and artists. I conclude by considering six reasons for giving preferential treatment to minority cultures that would allow multiculturalists to avoid this implication, which invoke, inter alia, the depth, duration, and involuntariness of cultural commitments; the role of culture in allowing people to live autonomously; and cultural rights to political self-determination. None are found to be convincing. (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)

Obesity is increasingly becoming a problem for Western societies, to the extent that politicians, scientists, patient organisations and the media now refer to it as ‘the obesity epidemic’. Concerns about the damaging effect of increasing body weight on public health has led to a strong growth in the amount of scientific work on the condition, with the medical professions leading the way. This article discusses that, first of all, scientific evidence for obesity-associated mortality is at best ambiguous, and proposes that (...) at least some of contemporary medical preoccupation with obesity has a moral origin in that it seeks to correct unwanted or immoral behaviour. It then continues to reflect on the effect of the conceptual transformation of healthy children into patients, and concludes with some reflections on the ethical implications of the obesity disease for the wellbeing of children. (shrink)

BackgroundPediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians.MethodologyAn empirical ethical approach, combining a narrative review of qualitative studies on parents' and physicians' experiences of the pediatric oncology research practice, (...) and comparison of these experiences with existing theoretical ethical concepts about research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice.ResultsAnalysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician . True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents.ConclusionDue to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. (shrink)

Genetic engineering evokes a number of objections that are not directed at the negative effects the technique might have on the health and welfare of the modified animals. The concept of animal integrity is often invoked to articulate these kind of objections. Moreover, in reaction to the advent of genetic engineering, the concept has been extended from the level of the individual animal to the level of the genome and of the species. However, the concept of animal integrity was not (...) developed in the context of genetic engineering. Given this external origin, the aim of this paper is to critically examine the assumption that the concept of integrity, including its extensions to the level of the genome and the species, is suitable to articulate and justify moral objections more specifically directed at the genetic engineering of animals. (shrink)

Obesity is increasingly becoming a problem for Western societies, to the extent that politicians, scientists, patient organisations and the media now refer to it as ‘the obesity epidemic’. Concerns about the damaging effect of increasing body weight on public health has led to a strong growth in the amount of scientific work on the condition, with the medical professions leading the way. This article discusses that, first of all, scientific evidence for obesity-associated mortality is at best ambiguous, and proposes that (...) at least some of contemporary medical preoccupation with obesity has a moral origin in that it seeks to correct unwanted or immoral behaviour. It then continues to reflect on the effect of the conceptual transformation of healthy children into patients, and concludes with some reflections on the ethical implications of the obesity disease for the wellbeing of children. (shrink)

It is not unusual for researchers to complain about institutional review board (IRB) oversight, but social scientists have a unique set of objections to the work of ethics committees. In an effort to better understand the problems associated with ethics review of social, behavioral, and economic sciences (SBES) research, this article examines 3 different aspects of research ethics committees: (a) the composition of review boards; (b) the guidelines used by these boards to review SBES - and in particular, behavioral health (...) - research; and (c) the actual deliberations of IRBs. The article concludes with recommendations for changes in the review process and with suggestions for filling the gaps in knowledge about the way IRBs work. (shrink)

Occasions of Identity is an exploration of timeless philosophical issues about persistence, change, time, and sameness. Andre Gallois offers a critical survey of various rival views about the nature of identity and change, and puts forward his own original theory. He supports the idea of occasional identities, arguing that it is coherent and helpful to suppose that things can be identical at one time but distinct at another. Gallois defends this view, demonstrating how it can solve puzzles about persistence (...) dating back to the Ancient Greeks, and investigates the metaphysical consequences of rejecting the necessity and eternity of identities. (shrink)

Many organizations offer their employees the opportunity to voice their opinions about work-related issues because of the positive consequences associated with offering such an opportunity. However, little attention has been given to the possibility that offering voice may have negative effects as well. We propose that negative consequences are particularly likely to occur when employees perceive the opportunity to voice opinions to be “pseudo voice”—voice opportunity given by managers who do not have the intention to actually consider employee input (i.e., (...) managerial disregard). The effects of this kind of deception were examined by means of a survey among employees ( N = 137) and managers ( N = 14) of a Dutch healthcare organization. We hypothesized and found that perceived pseudo voice led to reduced voice behavior and, as a result, increased intragroup conflict. These results imply that while offering voice opportunity is mostly seen as an effective management strategy, negative effects are likely to occur when a manager is perceived to try to deceive employees by pretending to be interested in their points of view. (shrink)

Intrinsic value and animal integrity are two key concepts in the debate on the ethics of the genetic engineering of laboratory animals. These concepts have, on the one hand, a theoretical origin and are, on the other hand, based on the moral beliefs of people not directly involved in the genetic modification of animals. This ‘external’ origin raises the question whether these concepts need to be adjusted or extended when confronted with the moral experiences and opinions of people directly involved (...) in the creation or use of transgenic laboratory animals. To answer this question, 35 persons from the practice of biomedical research who are directly involved in genetic engineering (scientists, biotechnicians, animal caretakers and laboratory animal scientists) were interviewed. They were asked to give their moral opinion on different aspects of the genetic engineering of animals and to react to statements about the concepts of intrinsic value and animal integrity. Analysis of the interviews showed that, contrary to what is often assumed, the respondents embraced these concepts, even those senses that (more) specifically apply to genetic engineering. And although the respondents raised some objections that go beyond issues of animal welfare, these objections could quite well be expressed in terms of the concepts of intrinsic value and animal integrity. In short, the results of the present study strongly suggest that these concepts do not have to be adjusted or extended in the light of the moral experiences and opinions from practice. (shrink)

Donors to biobanks are typically asked to give blanket consent, allowing their donation to be used in any research authorized by the biobank. This type of consent ignores the evidence that some donors have moral, religious, or cultural concerns about the future uses of their donations – concerns we call “non-welfare interests”. The nature of non-welfare interests and their effect on willingness to donate to a biobank is not well understood. In order to better undersand the influence of non-welfare interests, (...) we surveyed a national sample of the US population using a probability-based internet panel. Logistic regression models assessed the demographic and attitudinal characteristics associated with participants’ willingness to give consent for unspecified future uses of their donation when presented with 7 research scenarios that raised possible non-welfare interest concerns. Most people had non-welfare interests that significantly affect their willingness to donate to a biobank using blanket consent. Some non-welfare interests are associated with subgroups but others are not. A positive attitude toward biomedical research in general was associated with increased willingness to donate, while concerns about privacy and being African American were associated with decreased willingness. Non-welfare interests matter and can diminish willingness to donate to a biobank. Our data suggest that trust in research promotes willingness to donate. Ignoring non-welfare interests could erode this trust. Donors’ non-welfare interests could be accommodated through greater transparency and easier access to information about the uses of donations. (shrink)