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

De Vries' mutation theory has not stood the test of time. The supposed mutations of Oenothera were in reality complex recombination phenomena, ultimately explicable in Mendelian terms, while instances of large-scale mutations were found wanting in other species. By 1915 the mutation theory had begun to lose its grip on the biological community; by de Vries' death in 1935 it was almost completely abandoned. Yet, as we have seen, during the first decade of the present century it achieved (...) an enormous popularity. As this paper has tried to suggest, one of the principal reasons for this was that de Vries' theory served as a banner around which a whole crowd of disaffected Darwinians or anti-Darwinians could rally. However, not all of those who favored de Vries did so for quite the same reasons. Underlying the multitude of views ran several common threads: a dissatisfaction with current Darwinian theory born out of misunderstanding natural selection, a general misunderstanding of the nature of species, and a prejudice against speculative, nontestable theories in biology.Supporters of de Vries were not the only opponents of Darwinism, nor was the mutation theory the only alternative to natural selection. In the early twentieth century a number of theories had been proposed to explain away the problems which Darwin had left unsolved. There was the idea of orthogenesis, championed by the American paleontologists Cope, Osborn and others; organic selection (or orthoplasy) was championed by M. M. Baldwin and C. Lloyd Morgan; there were the concepts of convergent evolution proposed by Hermann Friedmann, the theory of physiological selection by John George Romanes, and the concepts of reproductive divergence by H. M. Vernon. Virtually none of these men either accepted or were strong supporters of the de Vriesian theory, for each had his own particular ‘ism” to advocate as the major factor in evolution. The existence of a large number of such theories, each purporting to be the explanation, was characteristic of evolutionary theory at the turn of the century. It is to a large extent the emphasis on such fragmentary concepts that retarded development of the comprehensive theory of evolution which emerged in the 1920's and 1930's. For the historian, however, a study of these alternative theories is instructive in trying to understand the inherent difficulties which Dawwinian theory posed to biologists at the time. De Vries' mutation theory serves historically as a mirror to reflect the critical mood of a generation hostile to the theory of natural selection.It has often been claimed that it was impossible to understand the mechanism of natural selection until it could be placed in genetic and mathematical terms. It is certainly true that great strides have been made in population genetics and the treatment of evolutionary concepts with mathematical tools in the last forty years. But the very people who developed the genetical and mathematical approach to evolution were already convinced of the essential correctness of Darwinian theory before they started. Advances in an understanding of Mendelian heredity aided greatly in solving one important issue for evolutionists: the origin of variations. And the rigor with which selection acted could best be studied by observing changes in gene frequencies (calculated mathematically) over a number of generations. But as this paper has shown, two of the basic problems which biologists faced in evaluating Darwinian theory at the turn of the century-the nature of species, and the criteria of what constituted an acceptable explanation in biological science-could not be answered directly by mathematics. What mathematical and genetical theory did do was to help convince the skeptics of the validity of the Darwinian proposition.The change in explanatory criteria which many hailed as de Vries' most important contribution to evolutionary theory seems to have been part of a general emergence of twentieth-century biology from the domination of theorizers in the nineteenth. It also marked the emergence of America from the domination of biological, and particularly evolutionary, influence of Europeans. The change occurred in three areas: in the kinds of questions asked: testable versus non-testable; in the kind of data sought: quantitative versus qualitative; and in the kinds of theories proposed: analytical and reductive—the attempt to see complex processes in terms of simpler components-as opposed to synthetic and speculative. Although ultimately wrong in his idea, de Vries and his theories rode high on the wave of “experimentalism” which was the harbinger of a new era in evolutionary theory. (shrink)

This note discusses lecture plates at the Hugo de Vries Laboratorium that may be relevant to Hugo de Vries's claim to have independently discovered Mendel's law of segregation. Dating when the plates were made is problematic.

Hugo de Vries claimed that he had discovered Mendel's laws before he found Mendel's paper. De Vries's first ratios, published in 1897, for the second generation of hybrids were 2/3:1/3 and 80%:20%. By 1900, both of these ratios had become 3:1. These changing ratios suggest that as late as 1897 de Vries had not discovered the laws, although he asserted, from 1900 on, that he had found the laws in 1896. An Appendix details de Vries's (...) Mendelian experiments as described in the original edition of volume two of Die Mutationstheorie, but omitted entirely from the English translation. (shrink)

A great deal is known about the technical issues surrounding the introduction of Hugo De Vries's mutation theory and the subsequent development of the modern genetical theory of natural selection. But so far little has been done to relate these events to the wider issues of the time. This article suggests that extra-scientific factors played a significant role, and substantiates this by comparing De Vries's respect for the original Darwinian spirit with Thomas Hunt Morgan's use of the (...) mutation theory as part of an attack on the whole philosophy of Darwinism. In particular, it is argued that Morgan's attitude was dictated by his moral objections to the picture of a world dominated by struggle. (shrink)

SummaryIt is argued that Hugo de Vries's conversion to Mendelism did not agree with his previous theoretical framework. De Vries regarded the number of offspring expressing a certain character as a hereditary quality, intrinsic to the state of the pangene involved. His was a shortlived conversion since after the ‘rediscovery’ he failed to unify his older views with Mendelism. De Vries was never very much of a Mendelian. The usual stories of the Dutch ‘rediscovery’ need, therefore, (...) a considerable reshaping. (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)

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

In 1889 Hugo de Vries published " Intracellular Pangenesis " in which he formulated his ideas on heredity. The high expectations of the impression these ideas would make did not come true and publication was negated or reviewed critically. From the reactions of his Dutch colleagues and the discussion with the famous German zoologist August Weismann we conclude that the assertion that each cell contains all hereditary material was controversial and even more the claim that characters are inherited (...) independently of each other. De Vries felt that he had to convince his colleagues of the validity of his theory by providing experimental evidence. He established an important research program which resulted in the rediscovery of Mendel's laws and the publication of "The Mutation Theory." This article also illustrates some phenomena that go beyond an interesting episode in the development of theories of heredity. It shows that criticism from colleagues can move a researcher so deeply that he feels compelled to set up an extensive research program. Moreover it illustrates that it is not unusual that a creative scientist is only partially willing to take criticism on his theories into account. Last but not least it demonstrates that common opinion on the validity of specific arguments may change in the course of time. (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)

Recent studies have shown that Hugo de Vries did not rediscover Mendel's laws independently and that the classical story of the rediscovery of Mendel is largely a myth. Until now, however, no satisfactory account has been provided of the background and development of de Vries' views on heredity and evolution. The basic tenets of de Vries' Mutationstheorie and his conception of Mendelism are still insufficiently understood. It has been suggested that de Vries failed to assimilate (...) Mendelism and that he wrote his Mutationstheorie in a state of confusion. In this paper I argue that we can arrive at a better understanding by adopting a more symmetrical approach. My analysis will concentrate on three important aspects of de Vries' thinking which have been insufficiently appreciated until now. The first is that de Vries' reading of Mendel compelled him to change his conception of the hereditary particles, the pangenes, in a fundamental way. The second is de Vries' use of the notion of ‘hereditary force’. The third revolves around de Vries' typological species concept, which has been the source of much confusion in the literature. I shall conclude that de Vries did succeed in incorporating ‘Mendelism’ into his wider views on heredity and evolution, and that he did manage to handle his evidence in a consistent way. Yet I shall also conclude that Mendelism, in de Vries' interpretation, had nothing to do with ‘normal’ heredity and was mainly a laboratory phenomenon. (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)

An account of the Rosicrucian manifestos, and in particular their call for a general reformation, in relation to medieval and early modern traditions and reform programs.

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.

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

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

Biografie van de Nederlandse wijsgeer (1632-1677).

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

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

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

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

The almost simultaneous and overlapping discoveries of Mendel's forgotten work by Hugo de Vries, Carl Correns, and Erik von Tschermak gave rise to an intense rivalry, some jealousy, and more than a little illfeeling. De Vries, the first to announce the discovery, has been subjected to the charge that he wished to conceal his discovery and to obtain for himself the credit for having discovered what we now call Mendelism. This charge involves the statement that de (...) class='Hi'>Vries gave credit to Mendel only after he had found that others had also read Mendel's papers. The evidence on which this charge is based is sketchy, and we can now show that at least that portion of it that is based on supposed alteration in the proof of de Vries' paper in the Berichte is without foundation. Unfortunately, de Vries gave three different accounts of how he was led to Mendel's work. Two of these involve Liberty Hyde Bailey.Bailey had listed Mendel's papers in a bibliography that he published in 1892 in The Rural Library. Bailey did not include this bibliography in the first edition (1895) of Plant Breeding or in its reprinting in 1896 and 1897. He did include the bibliography in the second edition (1902), but this was after de Vries and others had called attention to Mendel. In 1899, both Bailey and de Vries gave papers at the Hybrid Conference held at Chiswick, England, but we have no record of their having discussed Mendel. What evidence we have indicates that, at this time, neither of them had read Mendel's papers.De Vries wrote to Bailey that it was Bailey's listing of Mendel in the bibliography published in The Rural Library that led to his discovery of Mendel. Later, de Vries wrote to H. F. Roberts that he had first found a reference to Mendel in Bailey's Plant Breeding of 1895, where the bibliographic reference to Mendel's papers was not published. Finally, de Vries told Th. J. Stomps, who succeeded him at the University of Amsterdam, that he had first learned of Mendel early in 1900 from a reprint of Mendel's paper sent him by his friend Professor M. W. Beyerinck. Our present evidence favors Stomp's account as it shows that de Vries had not read Mendel's papers in 1899 but had early in 1900.Attempts to pinpoint de Vries' discovery of Mendel are aided in part, and in part confused, by the fact that he published five relevant papers in 1900. These papers were in press simultaneously, and some of them were altered in proof. Further confusion is due to the fact that at least three of them were published in the reverse order of their acceptance for publication. Unfortunately we do not have the crucial dates for all of the papers.J. Roy. Hort. Soc. 24: 69–75. A definitely pre-Mendelian paper given on 11 July 1899, and published in 1900 (possibly in April). The evidence for an alteration in proof after de Vries had read Mendel is shown by the fact that de Vries described a ratio of 99 to 54 as a 3 to 1 ratio.Rev. gén. botan. 12: 129–137. A Mendelian paper, giving the 3 to 1 ratio in the F2 generation of a cross between starchy and sugary corn. The paper is not dated by de Vries but it was published in the volume, 128 pages ahead of a paper de Vries dated 19 March. In a footnote, de Vries cites a paper by Correns that was published on 25 January, so we can tell that it was written or corrected in proof after this date. Here Correns showed de Vries that he had already read Mendel's paper. Any attempt by de Vries to ignore Mendel or get credit for Mendelism after 25 January would have been senseless. This date was nearly two months before de Vries' Berichte paper was submitted for publication.Ber. deut. botan. Ges. 18: 83–90. Accepted for publication 14 march, published 25 April. This paper gives Mendel full credit and stimulated the publications of Correns and von Tschermak. As de Vries was aware that Correns already knew of Mendel when the paper was first submitted, there was no occasion to alter it in proof.Rev. gén. botan. 12: 257–271. Dated by de Vries 19 March, but the proof was read after June. De Vries cites von Tschermak's paper in the Berichte that was published in June. The Revue paper is a Mendelian paper, and Mendel is cited on the last page.C. R. Acad. Sci. (Paris) 130: 845–847. Accepted for publication 26 March 1900. Reprint received by Correns 21 April. Mendel is not mentioned but de Vries' use of terms told Correns that de Vries had read Mendel's paper. First of the papers to be published, it caused Correns to assume that de Vries wanted the credit that was due Mendel.The three discoverers of Mendel did not form a mutual admiration society. (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)

In this paper we report findings from a commissioned report to the COVID-19 Clinical Research Coalition on approaches to streamline multinational REC review/approval during public health emergencies. As currently envisioned in the literature, a system of REC mutual recognition is theoretically possible based on shared procedural REC standards, but raises numerous concerns about perceived inequities and mistrust.

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

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

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