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)

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)

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.

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)

Bruno Latour is among the most important figures in contemporary philosophy and social science. His ethnographic studies have revolutionized our understanding of areas as diverse as science, law, politics and religion. To facilitate a more realistic understanding of the world, Latour has introduced a radically fresh philosophical terminology and a new approach to social science, ‘Actor-Network Theory’. In seminal works such as Laboratory Life, We Have Never Been Modern and An Inquiry into Modes of Existence, Latour has outlined an alternative (...) to the foundational categories of ‘modern’ western thought Ð particularly its distinction between society and nature Ð that has major consequences for our understanding of the ecological crisis and of the role of science in democratic societies. Latour’s ‘empirical philosophy’ has evolved considerably over the past four decades. In this lucid and compelling book, Gerard de Vries provides one of the first overviews of Latour’s work. He guides readers through Latour’s main publications, from his early ethnographies to his more recent philosophical works, showing with considerable skill how Latour’s ideas have developed. This book will be of great value to students and scholars attempting to come to terms with the immense challenge posed by Latour’s thought. It will be of interest to those studying philosophy, anthropology, sociology, science and technology studies, and almost all other branches of the social sciences and humanities. (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)

BackgroundGenome-wide association studies (GWAS) 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)

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)

According to H. H. Price, there have been two major approaches to understanding what it is to have a concept: the classical theory and the symbolist theory. The classical theory, whose heritage extends at least to Plato, takes having a concept to be a relation to a special sort of object, usually called a concept or universal. The kind of relation the thinking mind has to this object is most often conceived as analogous to sight, a version of the classical (...) theory which Price calls inspectivism. (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)

The topic of epistemic injustice in global health ethics is complex, important and vast. While presenting as nuanced and complete a picture of the challenge as we possibly could, we were acutely aware of our positionality and how it gave us a certain viewpoint that would need to be expanded by others with different positions and experiences. We were, therefore, delighted to receive the collected commentaries by Atuire,1 Abimbola,2 Frimpong-Mansoh,3 Nyamnjoh and Ewuoso,4 Tangwa,5 Ambrogi et al.6 We would like to (...) thank these authors for furthering our account by raising questions, pointing out gaps or complementing our analysis. The points raised by these authors—and many points that will undoubtedly be raised by others in future—should be critically engaged with as we collectively define and work towards a more epistemically just global health ethics. Specifically, two points stand out. First, Frimpong-Mansoh accurately diagnoses our ambiguity about being drawn into debates about relativism in bioethics. We …. (shrink)

In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. Health literacy issues have (...) been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples’ ability to enact moral agency in making such decisions. (shrink)

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)

The rise of genomic studies in Africa – not least due to projects funded under H3Africa – is associated with the development of a small number of biorepositories across Africa. For the ultimate success of these biorepositories, the creation of cell lines including those from selected H3Africa samples would be beneficial. In this paper, we map ethical challenges in the creation of cell lines.

The practice of making datasets publicly available for use by the wider scientific community has become firmly integrated in genomic science. One significant gap in literature around data sharing concerns how it impacts on scientists’ ability to preserve values and ethical standards that form an essential component of scientific collaborations. We conducted a qualitative sociological study examining the potential for harm to ethnic groups, and implications of such ethical concerns for data sharing. We focused our empirical work on the MalariaGEN (...) Consortium, one of the first international collaborative genomics research projects in Africa. (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)

In recent years, several theorists have defended a form of neutrality that seeks to equalise the benefits that state policies bestow upon citizens’ conceptions of the good life. For example, when state policies confer special benefits upon a conception that revolves around a particular culture, religion or type of sports, other cultures, religions or types of sports might be due compensation. This article argues that this kind of neutrality – which I refer to as ‘hands-on neutrality’ – cannot be vindicated, (...) whether it takes a resourcist form or welfarist form. After explaining why states cannot simply avoid bestowing unequal advantages upon citizens’ conceptions of the good life, I identify several versions of hands-on neutrality and show that all of them fail to respect the moral equality of citizens. (In so doing, however, I do find that a different form of neutrality is appropriately applied under a more limited set of conditions, which is lottery-based.) I conclude by showing that in cases where theories of hands-on neutrality have intuitive force, more plausible rival principles can account for our intuitions. (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)

Over the past decade, many philosophers have argued that to respect the moral equality of their citizens, states should be neutral toward certain forms of diversity among their populations. Areas in which the state neutrality has been advocated include, but are not limited to, citizens’ different religions; languages; and sexual orientations. However, there remains an important area where its normative (ir)relevance has not been discussed: That of neurodiversity. After identifying several ways in which contemporary states disfavor the interests of neurodivergent (...) groups relative to the neurotypical majority, including those of autistic people; dyslectic people; and people with ADHD, the most promising would be-justifications for such unequal treatment are considered. They maintain respectively that states only have to be neutral toward differences that feature in people’s conceptions of the good life; that addressing the discussed neuro-inequalities is too costly, whether financially or otherwise; that doing so raises intolerable risks of a public backlash; and that a commitment to neuro-neutrality leads to overinclusion. None are found to be convincing across the board, which leads me to conclude that states should become significantly more neuro-neutral than they are today. (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)

Some philosophers believe that swearing is morally innocent insofar as it is non‐abusive and vulgarities are being used, such as when people exclaim “s**t!” or “f**k!” This article shows this view to be mistaken. I start by arguing that taking offense at non‐abusive vulgar swearing is not irrational, before arguing that, even if it were, such swearing would still not always be justified. The fact that many of us find it hard to overcome profanity‐induced offense, along with the fact that (...) its existence is necessary for swearing to be possible, is sufficient to render even non‐abusive vulgar swearing sometimes wrong. I go on to assess the opposite view, according to which swearing, including non‐abusive vulgar swearing, is never justified, whereby two objections to this activity are addressed. According to the instrumentalization objection, the fact that swearing is possible only if at least some people are sometimes offended by the words that are used means that swearers treat those who are offended by their profanity as mere means. And according to the Ersatz objection, the fact that we can use inoffensive words to raise the emotional content of our speech renders swearing gratuitously offensive. Neither objection is found to be convincing. (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 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)

Many individuals on the autism spectrum are hypersensitive to certain sensory stimuli. For this group, as well as for non-autistic individuals with sensory processing disorders, being exposed to e.g. fluorescent lights, perfume odours, and various sounds and noises can be real torment. In this article, I consider the normative implications of such offence for the design of office spaces, which is a topic that has not received any attention from philosophers. After identifying different ways in which the senses of hypersensitive (...) workers might be protected within these spaces, I show that many of such accommodations can be made at reasonable cost, before arguing that doing so ought to be a legal requirement. (shrink)

The tendency towards an increasing integration of the informational web into our daily physical world (in particular in so-called Ambient Intelligent technologies which combine ideas derived from the field of Ubiquitous Computing, Intelligent User Interfaces and Ubiquitous Communication) is likely to make the development of successful profiling and personalization algorithms, like the ones currently used by internet companies such as Amazon , even more important than it is today. I argue that the way in which we experience ourselves necessarily goes (...) through a moment of technical mediation. Because of this algorithmic profiling that thrives on continuous reconfiguration of identification should not be understood as a supplementary process which maps a pre-established identity that exists independently from the profiling practice. In order to clarify how the experience of one’s identity can become affected by such machine-profiling a theoretical exploration of identity is made (including Agamben’s understanding of an apparatus , Ricoeur’s distinction between idem - and ipse -identity, and Stiegler’s notion of a conjunctive–disjunctive relationship towards retentional apparatuses ). Although it is clear that no specific predictions about the impact of Ambient Intelligent technologies can be made without taking more particulars into account, the theoretical concepts are used to describe three general scenarios about the way wherein the experience of identity might become affected. To conclude, I argue that the experience of one’s identity may affect whether the cases of unwarranted discrimination resulting from ubiquitous differentiations and identifications within an Ambient Intelligent environment, will become a matter of societal concern. (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)

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)

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

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)

Pediatric 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. An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of the pediatric (...) oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Analysis 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 (doctor vs. scientist). 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. Due 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)

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)

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)

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)

*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...