Logical frameworks for analysing the dynamics of information processing abound [4, 5, 8, 10, 12, 14, 20, 22]. Some of these frameworks focus on the dynamics of the interpretation process, some on the dynamics of the process of drawing inferences, and some do both of these. Formalisms galore, so it is felt that some conceptual streamlining would pay off.This paper is part of a larger scale enterprise to pursue the obvious parallel between information processing and imperative programming. We demonstrate that (...) logical tools from theoretical computer science are relevant for the logic of information flow. More specifically, we show that the perspective of Hoare logic [13, 18] can fruitfully be applied to the conceptual simplification of information flow logics. (shrink)

Logical frameworks for analysing the dynamics ofinformation processing abound [4, 5, 8, 10, 12, 14, 20, 22]. Some of these frameworks focus on the dynamics of the interpretation process, some on the dynamics of the process of drawing inferences, and some do both of these. Formalisms galore, so it is felt that some conceptual streamlining would pay off. This paper is part of a larger scale enterprise to pursue the obvious parallel between information processing and imperative programming. We demonstrate that (...) logical tools from theoretical computer science are relevant for the logic of information flow. More specifically, we show that the perspective of bare logic [13, 18] can fruitfully be applied to the conceptual simplification of information flow logics. Part one of this program consisted of the analysis of 'dynamic interpretation' in this way, using the example of dynamic predicate logic [10]; the results were published in [7]. The present paper constitutes the second part of the program, the analysis of 'dynamic inference'. Here we focus on Veltman’s update logic [22]. Update logic is an example of a logical framework which takes the dynamics of drawing inferences into account by modelling information growth as discarding of possibilities. This paper shows how information logics like update logic can fruitfully be studied by linking their dynamic principles to static 'correctness descriptions'. Our theme is exemplified by providing a sound and complete HoarelPratt style deduction system for update logic. The Hoare/Pratt correctness statements use modal propositional dynamic logic as assertion language and connect update logic to the modal propositional logic S5. The connection with S5 provides a clear link between the dynamic and the static semantics of update logic. The fact that update logic is decidable was noted already in [2]; the connection with S5 provides an alternative proof. The S5 connection can also be used for rephrasing the validity notions of update logic and for performing consistency checks. In conclusion, it is argued that interpreting the dynamic statements of information logics as dynamic modal operators has much wider applicability. In fact, the method can be used to axiomatize quite a wide range of information logics. (shrink)

In this paper we present a dynamic assignment language which extends the dynamic predicate logic of Groenendijk and Stokhof [1991: 39–100] with assignment and with generalized quantifiers. The use of this dynamic assignment language for natural language analysis, along the lines of o.c. and [Barwise, 1987: 1–29], is demonstrated by examples. We show that our representation language permits us to treat a wide variety of donkey sentences: conditionals with a donkey pronoun in their consequent and quantified sentences with donkey pronouns (...) anywhere in the scope of the quantifier. It is also demonstrated that our account does not suffer from the so-called proportion problem.Discussions about the correctness or incorrectness of proposals for dynamic interpretation of language have been hampered in the past by the difficulty of seeing through the ramifications of the dynamic semantic clauses (phrased in terms of input-output behaviour) in non-trivial cases. To remedy this, we supplement the dynamic semantics of our representation language with an axiom system in the style of Hoare. While the representation languages of barwise and Groenendijk and Stokhof were not axiomatized, the rules we propose form a deduction system for the dynamic assignment language which is proved correct and complete with respect to the semantics. (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)

Introduction Introduction / Jan de Vries 1 Art in History / Gary Schwartz 7 History in Art / J. W. Smit 17 Pt. I Art and Reality Market Scenes As Viewed by an Art Historian / Linda Stone-Ferrier 29 Market Scenes As Viewed by a Plant Biologist / Willem A. Brandenburg 59 Marine Paintings and the History of Shipbuilding / Richard W. Unger 75 Skies and Reality in Dutch Landscape / John Walsh 95 Some Notes on Interpretation / E. (...) de Jongh 119 Are These Girls Really So Neat? On Kitchen Scenes and Method / Jochen Becker 139 Didactic and Disguised Meanings? Several Seventeenth-Century Texts on Painting and the Iconological Approach to Northern Dutch Paintings of This Period / Eric J. Sluijter 175 The Changing Face of Realism / Lyckle de Vries 209 Pt. II Art, Economy, and Society Art History / Jan de Vries 249 The Volume and Value of Paintings in Holland at the Time of the Dutch Republic / Ad van der Woude 285 Works of Art in Seventeenth-Century Amsterdam: An Analysis of Subjects and Attributions / John Michael Montias 331 Conclusion Science, Commerce, and Art: Neglected Topics at the Junction of History and Art History / David Freedberg 377 Biographical Notes on the Authors 429 Index. (shrink)

Deception is part of the natural repertoire of adaptive behaviours in many organisms. In humans we see it in all domains of human activity including health care. Within health care, deception can be a matter of concern, but it is also used to protect patients, for instance against overwhelming and negative diagnostics. This paper demonstrates that deception and self‐deception are closely interlinked and that self‐deception facilitates deception. Furthermore, self‐deception tends to be used to reduce the discomfort we feel when we (...) are dishonest (cognitive dissonance). The paper includes references to core psychological mechanisms and ethical aspects. (shrink)

This paper responds to the commentaries from Stacy Carter and Alan Cribb. We pick up on two main themes in our response. First, we reflect on how the process of setting standards for empirical bioethics research entails drawing boundaries around what research counts as empirical bioethics research, and we discuss whether the standards agreed in the consensus process draw these boundaries correctly. Second, we expand on the discussion in the original paper of the role and significance of the concept of (...) ‘integrating’ empirical methods and ethical argument as a standard for research practice within empirical bioethics. (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)

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)

In 2014, the editorial board of BMC Medical Ethics came together to devise sections for the journal that would give structure to the journal help ensure that authors’ research is matched to the most appropriate editors and help readers to find the research most relevant to them. The editorial board decided to take a practical approach to devising sections that dealt with the challenges of content management. After that, we started thinking more theoretically about how one could go about classifying (...) the field of medical ethics. This editorial elaborates and reflects on the practical approach that we took at the journal, then considers an alternative theoretically derived approach, and reflects on the possibilities, challenges and value of classifying the field more broadly. (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)

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)

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)

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)

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)

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)

*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...

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)

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)

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.

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)

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)

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)

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)

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)

Genomic research and biobanking present several ethical, social and cultural challenges, particularly when conducted in settings with limited scientific research capacity. One of these challenges is determining the model of consent that should support the sharing of human biological samples and data in the context of international collaborative research. In this paper, we report on the views of key research stakeholders in Ghana on what should count as good ethical practice when seeking consent for genomic research and biobanking in Africa. (...) This study was part of a multi-country qualitative case study conducted in three African countries: Ghana, Uganda and Zambia under the auspices of the Human Heredity and Health in Africa initiative. Our study suggests that while participants are willing to give consent for their samples and associated data to be used for future research purposes, they expect to receive feedback about the progress of the research and about the kinds of research being undertaken on their samples and data. These expectations need to be anticipated and discussed during the consent process which should be seen as part of an ongoing communication process throughout the research process. (shrink)

ABSTRACT Genomic research and biobanking present several ethical, social and cultural challenges, particularly when conducted in settings with limited scientific research capacity. One of these challenges is determining the model of consent that should support the sharing of human biological samples and data in the context of international collaborative research. In this paper, we report on the views of key research stakeholders in Ghana on what should count as good ethical practice when seeking consent for genomic research and biobanking in (...) Africa. This study was part of a multi-country qualitative case study conducted in three African countries: Ghana, Uganda and Zambia under the auspices of the Human Heredity and Health in Africa initiative (H3Africa). Our study suggests that while participants are willing to give consent for their samples and associated data to be used for future research purposes, they expect to receive feedback about the progress of the research and about the kinds of research being undertaken on their samples and data. These expectations need to be anticipated and discussed during the consent process which should be seen as part of an ongoing communication process throughout the research process. (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)

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)

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)