At the height of the COVID-19 crisis in the Netherlands a shortness of intensive care beds was looming. Dutch professional medical organizations asked a group of ethicists for assistance in drafting guidelines and criteria for selection of patients for intensive care treatment in case of absolute scarcity, when medical selection criteria would no longer suffice. This article describes the Dutch context, the process of drafting the advice and reflects on the role of ethicists and lessons learned. We argue that timely (...) interaction between clinical and ethical expertise is necessary since the distinction between medical and non-medical considerations is not as clearcut as sometimes assumed. Furthermore, pragmatic considerations related to the specifics of an epidemic are of importance, for example, in relation to prioritizing health care workers. As a consequence, any protocol already present before the pandemic would need alterations to fit the current situation. The ‘fair innings’ criterion we proposed, rephrased as an argument of intergenerational solidarity, was considered reasonable by professionals as well as patient organizations. While it is desirable to draft ethical guidelines in ‘peacetime’ as a matter of pandemic preparedness, the pressure of an actual crisis facilitates decision-making, although it will also complicate a more democratic approach. (shrink)

This paper discusses prominent examples of what we call “algorithmic anxiety” in artworks engaging with algorithms. In particular, we consider the ways in which artists such as Zach Blas, Adam Harvey and Sterling Crispin design artworks to consider and critique the algorithmic normativities that materialize in facial recognition technologies. Many of the artworks we consider center on the face, and use either camouflage technology or forms of masking to counter the surveillance effects of recognition technologies. Analyzing their works, we argue (...) they on the one hand reiterate and reify a modernist conception of the self when they conjure and imagination of Big Brother surveillance. Yet on the other hand, their emphasis on masks and on camouflage also moves beyond such more conventional critiques of algorithmic normativities, and invites reflection on ways of relating to technology beyond the affirmation of the liberal, privacy-obsessed self. In this way, and in particular by foregrounding the relational modalities of the mask and of camouflage, we argue academic observers of algorithmic recognition technologies can find inspiration in artistic algorithmic imaginaries. (shrink)

Sellars claims completeness for both the “manifest” and the “scientific images” in a way that tempts one to assume that they are independent of each other, while, in fact, they must share at least one common element: the language of individual and community intentions. I argue that this significantly muddies the waters concerning his claim of ontological primacy for the scientific image, though not in favor of the ontological primacy of the manifest image. The lesson I draw is that we (...) need to re-assess the aims of ontology. (shrink)

In order to provide an alternative to the Cartesian myth that knowledge of our thoughts and sensations is "given," Sellars posits a community of "Rylean ancestors" - humans at an early stage of conceptual development who possess a language containing sophisticated concepts about the physical world and about their own language and behavior, but who lack any concepts of thoughts or sensations. Sellars's presentation of this thought experiment leaves many important details sketchy. In the following dialogue, we offer our differing (...) assessments of how well those details could be filled out. TT questions how the Rylean hypothesis could provide a plausible account of human thought and sensory experience at any stage of human conceptual development. WdeV responds to TT's challenge by filling out the picture of what the Ryleans' conceptual world would look like. TT and WdeV debate the merits and the plausibility of the resulting picture. (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)

Almost fifty years ago, Wilfrid Sellars first proposed that psychological concepts are like theoretical concepts. Since then, several different research programs have been based on this conjecture. This essay examines what his original claim really amounted to and what it was supposed to accomplish, and then uses that understanding of the original project to investigate the extent to which the later research projects expand on it or depart from it.

It is a commonplace in a review of a new book about Hegel to remark upon the proliferation of such treatises. Nonetheless, most such books recently have not dealt with Hegel comprehensively, narrowing their consideration instead to a particular theme, a particular text, or both. This is a healthy trend, but it also means that a new book which aims at giving an overview of Hegel’s development and system is still a singular event, especially when it accomplishes its goal as (...) well as Hegel, edited by Otto Pöggeler. The book, written in German and as yet untranslated, is part of a series of introductions to great philosophers published by Karl Alber and is intended to help people without specific knowledge of Hegel gain access and familiarity with his work. Despite these modest intentions, Hegel can also be profitably read by the most erudite Hegel scholar, for it represents in a concise format the state of Hegel scholarship. (shrink)

Hegel’s Philosophy of Action contains the papers from a joint meeting of the Hegel Societies of America and Great Britain held at Oxford in 1981. But it presents an even broader spectrum of Hegel studies, for six different countries are represented.

The question is whether Elder can find support for this position in Hegel’s corpus. Elder quickly points to the problematic passages, passages in which Hegel indicates that physical explanations are not applicable to functioning organisms, nor physiological explanations to rational agents as such. According to Elder, however, Hegel can support such a view only if he claims that functional episodes of human behavior do not yield to lower-level explanation, that only the non-functional episodes do. The only support for such a (...) claim Elder can offer is the doctrine of vitalism. But Hegel attacks vitalism quite explicitly. Elder concludes that there is therefore no straightforward answer as to what Hegel’s position really is. He takes heart, however, because we do have reason now for rejecting vitalism, and therefore rejecting the position that episodes of functional human behavior are not amenable to physical or physiological explanation. Thus, he takes Hegel to have sketched a significant and successful response to the mind-body problem. (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)

This paper shows that the resources mobilized by recent arguments against individualism in the philosophy of mind also suffice to construct a good argument against a Humean-style skepticism about our knowledge of extra-mental reality. The argument constructed, however, will not suffice to lay to rest the attacks of a truly global skeptic who rejects the idea that we usually know what our occurrent mental states are.

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)

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)

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)

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.

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

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)

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)

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

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)

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)

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

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

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

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.

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)

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)

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

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

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)

The use of genome-wide association studies in medical research and the increased ability to share data give a new twist to some of the perennial ethical issues associated with genomic research. GWAS create particular challenges because they produce fine, detailed, genotype information at high resolution, and the results of more focused studies can potentially be used to determine genetic variation for a wide range of conditions and traits. The information from a GWA scan is derived from DNA that is a (...) powerful personal identifier, and can provide information not just on the individual, but also on the individual's relatives, related groups, and populations. Furthermore, it creates large amounts of individual-specific digital information that is easy to share across international borders. This paper provides an overview of some of the key ethical issues around GWAS: consent, feedback of results, privacy, and the governance of research. Many of the questions that lie ahead of us in terms of the next generation sequencing methods will have been foreshadowed by GWAS and the debates around ethical and policy issues that these have created. (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)

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)

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

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