Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study.

Background: The high disease burden of Africa, the emergence of new diseases and efforts to address the 10/90 gap have led to an unprecedented increase in health research activities in Africa. Consequently, there is an increase in the volume and complexity of protocols that ethics review committees in Africa have to review. Methods: With a grant from the Bill and Melinda Gates Foundation, the African Malaria Network Trust (AMANET) undertook a survey of 31 ethics review committees (ERCs) across sub-Saharan Africa (...) as an initial step to a comprehensive capacity-strengthening programme. The number of members per committee ranged from 3 to 21, with an average of 11. Members of 10 institutional committees were all from the institution where the committees were based, raising prima facie questions as to whether independence and objectivity could be guaranteed in the review work of such committees. Results: The majority of the committees (92%) cited scientific design of clinical trials as the area needing the most attention in terms of training, followed by determination of risks and benefits and monitoring of research. The survey showed that 38% of the ERC members did not receive any form of training. In the light of the increasing complexity and numbers of health research studies being conducted in Africa, this deficit requires immediate attention. Outcome: The survey identified areas of weakness in the operations of ERCs in Africa. Consequently, AMANET is addressing the identified needs and weaknesses through a 4-year capacity-building project. (shrink)

Background: Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study. Methods: The study used a rapid assessment incorporating multiple qualitative methods (...) including in depth interviews, focus group discussions and observations of consent processes. Differences between verbal information provided during community engagement processes, and consent processes during the enrolment of cases and controls were identified, as well as the factors influencing the tailoring of such information. Results: MalariaGEN participants and field staff seeking consent were generally satisfied with their understanding of the project and were familiar with aspects of the study relating to malaria. Some genetic aspects of the study were also well understood. Participants and staff seeking consent were less aware of the methodologies employed during genomic research and their implications, such as the breadth of data generated and the potential for future secondary research.Moreover, trust in and previous experience with the Navrongo Health Research Centre which was conducting the research influenced beliefs about the benefits of participating in the MalariaGEN study and subsequent decision-making about research participation. Conclusions: It is important to recognise that some aspects of complex genomic research may be of less interest to and less well understood by research participants and that such gaps in understanding may not be entirely addressed by best practice in the design and conduct of consent processes. In such circumstances consideration needs to be given to additional protections for participants that may need to be implemented in such research, and how best to provide such protections.Capacity building for research ethics committees with limited familiarity with genetic and genomic research, and appropriate engagement with communities to elicit opinions of the ethical issues arising and acceptability of downstream uses of genome wide association data are likely to be important. (shrink)

In recent years, there has been an increase in the establishment of biobanks for genetic and genomic studies around the globe. One example of this is the Human Heredity and Health in Africa Initiative (H3Africa), which has established biobanks in the sub‐region to facilitate future indigenous genomic studies. The concept of ‘broad consent’ has been proposed as a mechanism to enable potential research participants in biobanks to give permission for their samples to be used in future research studies. However, questions (...) remain about the acceptability of this model of consent. Drawing on findings from empirical research about the role of trust in decision‐making, we argue that an account of entrustment may be an appropriate way of addressing current challenges of seeking consent for biobank research in Africa. We propose a set of key points to consider that can support the proposed entrustment framework. (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)

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)

For many decades, access to human biological samples, such as cells, tissues, organs, blood, and sub-cellular materials such as DNA, for use in biomedical research, has been central in understanding the nature and transmission of diseases across the globe. However, the limitations of current ethical and regulatory frameworks in sub-Saharan Africa to govern the collection, export, storage and reuse of these samples have resulted in inconsistencies in practice and a number of ethical concerns for sample donors, researchers and research ethics (...) committees. This paper examines stakeholders’ perspectives of and responses to the ethical issues arising from these research practices. (shrink)

In the past decade, there has been an increase in genomic research and biobanking activities in Africa. Research initiatives such as the Human Heredity and Health in Africa Consortium are contributing to the development of scientific capacity and infrastructure to support these studies on the continent. Despite this growth, genomic research and biobanking have raised important ethical challenges for key research stakeholders, including members of research ethics committees. One of these is the limited ethical and regulatory frameworks to guide the (...) review and conduct of genomic studies, particularly in Africa. This paper is a reflection on a series of consultative activities with research ethics committees in Africa which informed the development of an ethics and governance framework for best practices in genomic research and biobanking in Africa. The paper highlights the engagement process and the lessoned learned. (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)

Genomic biobanking research is undergoing exponential growth in Africa raising a host of legal, ethical and social issues. Given the scientific complexity associated with genomics, there is a growing recognition globally of the importance of science translation and community engagement for this type of research, as it creates the potential to build relationships, increase trust, improve consent processes and empower local communities. Despite this level of recognition, there is a lack of empirical evidence of the practise and processes for effective (...) CE in genomic biobanking in Africa. To begin to address this vacuum, 17 in-depth face to face interviews were conducted with South African experts in genomic biobanking research and CE to provide insight into the process, benefits and challenges of CE in South Africa. Emerging themes were analysed using a contextualised thematic approach. Several themes emerged concerning the conduct of CE in genomic biobanking research in Africa. Although the literature tends to focus on the local community in CE, respondents in this study described three different layers of stakeholder engagement: community level, peer level and high level. Community level engagement includes potential participants, community advisory boards and field workers; peer level engagement includes researchers, biobankers and scientists, while high level engagement includes government officials, funders and policy makers. Although education of each stakeholder layer is important, education of the community layer can be most challenging, due to the complexity of the research and educational levels of stakeholders in this layer. CE is time-consuming and often requires an interdisciplinary research team approach. However careful planning of the engagement strategy, including an understanding of the differing layers of stakeholder engagement, and the specific educational needs at each layer, can help in the development of a relationship based on trust between the research team and various stakeholder groups. Since the community layer often comprises vulnerable populations in low and middle income countries, co-development of innovative educational tools on genomic biobanking is essential. CE is clearly a component of a broader process best described as stakeholder engagement. (shrink)

ABSTRACT The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with (...) RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (shrink)

Community engagement has been recognised as an important aspect of the ethical conduct of biomedical research, especially when research is focused on ethnically or culturally distinct populations. While this is a generally accepted tenet of biomedical research, it is unclear what components are necessary for effective community engagement, particularly in the context of genomic research in Africa.

This article featuring Ghana constitutes one of five articles in a collection of essays on local capacity-building in research ethics by graduates from the University of Toronto’s Joint Centre for Bioethics MHSc in Bioethics, International Stream programme funded by the Fogarty International Center for Advanced Study in the Health Sciences (FIC). Although there are no national ethical guidelines in Ghana, eight research ethics committees have been established in the country, with a number of them obtaining Federal Wide Assurances (FWA) from (...) the United States Office for Human Research Protections (OHRP).However, the existing ethics committees cannot match the volume of work to be done, especially in light of the increase of research activities in the country. This calls for the need to train more people in research ethics to fill that gap and provide continuing education to members of research ethics committees in the country. (shrink)

The incredible achievements of modern scientific theories lead most of us to embrace scientific realism: the view that our best theories offer us at least roughly accurate descriptions of otherwise inaccessible parts of the world like genes, atoms, and the big bang. In Exceeding Our Grasp, Stanford argues that careful attention to the history of scientific investigation invites a challenge to this view that is not well represented in contemporary debates about the nature of the scientific enterprise. The historical record (...) of scientific inquiry, Stanford suggests, is characterized by what he calls the problem of unconceived alternatives. Past scientists have routinely failed even to conceive of alternatives to their own theories and lines of theoretical investigation, alternatives that were both well-confirmed by the evidence available at the time and sufficiently serious as to be ultimately accepted by later scientific communities. Stanford supports this claim with a detailed investigation of the mid-to-late 19th century theories of inheritance and generation proposed in turn by Charles Darwin, Francis Galton, and August Weismann. He goes on to argue that this historical pattern strongly suggests that there are equally well-confirmed and scientifically serious alternatives to our own best theories that remain currently unconceived. Moreover, this challenge is more serious than those rooted in either the so-called pessimistic induction or the underdetermination of theories by evidence, in part because existing realist responses to these latter challenges offer no relief from the problem of unconceived alternatives itself. Stanford concludes by investigating what positive account of the spectacularly successful edifice of modern theoretical science remains open to us if we accept that our best scientific theories are powerful conceptual tools for accomplishing our practical goals, but abandon the view that the descriptions of the world around us that they offer are therefore even probably or approximately true. (shrink)

The place of the emotions among the passions -- The analytic of the emotions I -- The analytic of the emotions II -- The dialectic of the emotions -- Pride, arrogance, and humility -- Shame, embarrassment, and guilt -- Envy -- Jealousy -- Anger -- Love -- Friendship -- Sympathy and empathy.

Some scientific categories seem to correspond to genuine features of the world and are indispensable for successful science in some domain; in short, they are natural kinds. This book gives a general account of what it is to be a natural kind and puts the account to work illuminating numerous specific examples.

By the time of his death in 2006, Sir Peter Strawson was regarded as one of the world's most distinguished philosophers. Unavailable for many years,_ Scepticism and Naturalism_ is a profound reflection on two classic philosophical problems by a philosopher at the pinnacle of his career. Based on his acclaimed Woodbridge lectures delivered at Columbia University in 1983, Strawson begins with a discussion of scepticism, which he defines as questioning the adequacy of our grounds for holding various beliefs. He then (...) draws deftly on Hume and Wittgenstein to argue that we must distinguish between 'hard', scientific naturalism; or 'soft', humanistic naturalism. In the remaining chapters the author takes up several issues in which sceptical doubts play an important role, in particular the nature of transcendental arguments and including the objectivity of moral philosophy, the mental and the physical, and the existence of abstract entities. _Scepticism and Naturalism_ is essential reading for those seeking an introduction to the work of one of the twentieth century’s most important and original philosophers. This reissue includes a substantial new foreword by Quassim Cassam and a fascinating intellectual autobiography by Strawson, which together form an excellent introduction to his life and work. (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)

Background The rise in genomic and biobanking research worldwide has led to the development of different informed consent models for use in such research. This study analyses consent documents used by investigators in the H3Africa (Human Heredity and Health in Africa) Consortium. Methods A qualitative method for text analysis was used to analyse consent documents used in the collection of samples and data in H3Africa projects. Thematic domains included type of consent model, explanations of genetics/genomics, data sharing and feedback of (...) test results. Results Informed consent documents for 13 of the 19 H3Africa projects were analysed. Seven projects used broad consent, five projects used tiered consent and one used specific consent. Genetics was mostly explained in terms of inherited characteristics, heredity and health, genes and disease causation, or disease susceptibility. Only one project made provisions for the feedback of individual genetic results. Conclusion H3Africa research makes use of three consent models—specific, tiered and broad consent. We outlined different strategies used by H3Africa investigators to explain concepts in genomics to potential research participants. To further ensure that the decision to participate in genomic research is informed and meaningful, we recommend that innovative approaches to the informed consent process be developed, preferably in consultation with research participants, research ethics committees and researchers in Africa. (shrink)

The concept of normal is so familiar that it can be hard to imagine contemporary life without it. Yet the term entered everyday speech only in the mid-twentieth century. Before that, it was solely a scientific term used primarily in medicine to refer to a general state of health and the orderly function of organs. But beginning in the middle of the twentieth century, normal broke out of scientific usage, becoming less precise and coming to mean a balanced condition to (...) be maintained and an ideal to be achieved. In Normality, Peter Cryle and Elizabeth Stephens offer an intellectual and cultural history of what it means to be normal. They explore the history of how communities settle on any one definition of the norm, along the way analyzing a fascinating series of case studies in fields as remote as anatomy, statistics, criminal anthropology, sociology, and eugenics. Cryle and Stephens argue that since the idea of normality is so central to contemporary disability, gender, race, and sexuality studies, scholars in these fields must first have a better understanding of the context for normality. This pioneering book moves beyond binaries to explore for the first time what it does—and doesn’t—mean to be normal. (shrink)

By the time of his death in 2006, Sir Peter Strawson was regarded as one of the world's most distinguished philosophers. Unavailable for many years,_ Scepticism and Naturalism_ is a profound reflection on two classic philosophical problems by a philosopher at the pinnacle of his career. Based on his acclaimed Woodbridge lectures delivered at Columbia University in 1983, Strawson begins with a discussion of scepticism, which he defines as questioning the adequacy of our grounds for holding various beliefs. He then (...) draws deftly on Hume and Wittgenstein to argue that we must distinguish between 'hard', scientific naturalism; or 'soft', humanistic naturalism. In the remaining chapters the author takes up several issues in which sceptical doubts play an important role, in particular the nature of transcendental arguments and including the objectivity of moral philosophy, the mental and the physical, and the existence of abstract entities. _Scepticism and Naturalism_ is essential reading for those seeking an introduction to the work of one of the twentieth century’s most important and original philosophers. This reissue includes a substantial new foreword by Quassim Cassam and a fascinating intellectual autobiography by Strawson, which together form an excellent introduction to his life and work. (shrink)

An Interdisciplinary Approach to Cognitive Modelling presents a new approach to cognition that challenges long-held views. It systematically develops a broad-based framework to model cognition, which is mathematically equivalent to the emerging 'quantum-like modelling' of the human mind. The book argues that a satisfactory physical and philosophical basis of such an approach is missing, a particular issue being the application of quantization to the mind for which there is no empirical evidence as yet. In response to this issue, the book (...) adopts a COM (classical optical modelling) approach, broad-based but mathematically equivalent to quantum-like modelling while avoiding its problematic features. It presents a philosophically informed and empirically motivated mathematical model of cognition, mainly concerning decision making processes. It also deals with applications to different areas of the social sciences. It will be of interest to scholars and research students interested in the mathematical modelling of cognition and decision making, and also interdisciplinary researchers interested in broader issues of cognition. (shrink)

This study concerns the ideas of one particular philosopher, Henri Bergson, whose views of time, intuition, and creativity have had a significant impact on art, literature, and the humanities, both in his time and in our own. Although it is generally recognized that Bergson's ideas have significantly impacted the arts and the humanities, it has not been recognized how they have also had a creative influence on the sciences as well. Nor has it been realized that this was one of (...) his most basic contentions. Bergson's conception of intuition--his fundamental insight into reality--was not limited to fugitive insights into human existence. By realizing previously unsuspected possibilities for research and discovery, his endeavors were also meant to make possible new advances in the sciences. If it enabled his cousin by marriage, Marcel Proust, to explore human memory in depth, it also inspired psychologists like Daniel Schachter to use Bergson's ideas to make real contributions to contemporary memory science. If his notion of creative evolution brought many thinkers to a belief in human creative freedom, it brought others (notably Alexis Carrel and Pierre Lecomte de Noüy) to a scientific study of biological time. Among his successful speculations was the theory of the Big Bang cosmology. 'Getting Bergson Straight' shows many points at which Bergson's ideas anticipated future developments in the sciences. This was seen clearly by the Nobel Prize-winning physicist Luis de Broglie who viewed Bergson's physics as presaging quantum physics. Thus, the text is well situated for arts, humanities, social science, and natural science classrooms studying creative thinking and/or intellectual history. (shrink)

Profoundly important ethical and political controversies turn on the question of whether biological life is an essential aspect of a human person, or only an extrinsic instrument. Lee and George argue that human beings are physical, animal organisms - albeit essentially rational and free - and examine the implications of this understanding of human beings for some of the most controversial issues in contemporary ethics and politics. The authors argue that human beings are animal organisms and that their personal identity (...) across time consists in the persistence of the animal organisms they are; they also argue that human beings are essentially rational and free and that there is a radical difference between human beings and other animals; criticize hedonism and hedonistic drug-taking; present detailed defenses of the prolife positions on abortion and euthanasia; and defend the traditional moral position on marriage and sexual acts. (shrink)

Do the ethical features of an artwork bear on its aesthetic value? This movie endorses misogyny, that song is a civil rights anthem, the clay constituting this statue was extracted with underpaid labor—are facts like these the proper bases for aesthetic evaluation? I argue that this debate has suffered from a false presupposition: that if the answer is yes (for at least some such ethical features), such considerations feature as pro tanto contributions to an artwork's overall aesthetic value, i.e., as (...) merits or flaws which make something have more or less overall aesthetic value. As the case of ethically laden, aesthetic evaluation makes clear, however, good aesthetic judgement is irreducibly multi-dimensional, e.g., "the movie has an engaging soundtrack, tasteful camera work, and takes a misogynistically prurient perspective on its female lead.'' Such a "non-summative" judgement refuses to reduce those various dimensions of aesthetic value to a single aggregate aesthetic evaluation, like "it's a 6/10" or "it's a pretty good movie!" I defend both the modest claim that such non-summative evaluations are not mistaken and the extremist claim that summative (i.e., unidimensional) aesthetic evaluation is defective by considering other domains of normative assessment in which summing seems inappropriate, notably including evaluations of people's character. (shrink)

BackgroundA fundamental ethical challenge in conducting genomics research is the question of what and how individual level genetic findings and aggregate genomic results should be conveyed to research participants and communities. This is within the context of minimal guidance, policies, and experiences, particularly in Africa. The aim of this study was to explore the perspectives of key stakeholders' on returning genomics research results to participants in Kenya.MethodsThis qualitative study involved focus group discussions (FGDs) and in-depth interviews (IDIs) with 69 stakeholders. (...) The purposively selected participants, included research ethics committee (REC) members (8), community members (44), community resource persons (8), and researchers (9). A semi-structured interview guide was used to facilitate discussions. Six FGDs and twenty-five (IDIs) were conducted among the different stakeholders. The issues explored in the interviews included: (1) views on returning results, (2) kind of results to be returned, (3) value of returning results to participants, and (4) challenges anticipated in returning results to participants and communities. The interviews were audio-recorded, transcribed verbatim, and coded in Nvivo 12 pro. Thematic and content analysis was conducted.ResultsParticipants agreed on the importance of returning genomic results either as individual or aggregate results. The most cited reasons for returning of genomic results included recognizing participants' contribution to research, encouraging participation in future research, and increasing the awareness of scientific progress. Other aspects on how genomic research results should be shared included sharing easy to understand results in the shortest time possible and maintaining confidentiality when sharing sensitive results.ConclusionsThis study identified key stakeholders’ perspectives on returning genomic results at the individual and community levels in two urban informal settlements of Nairobi. The majority of the participants expect to receive feedback about their genomic results, and it is an obligation for researchers to see how to best fulfil it. (shrink)

This practical and essential text, co-authored by an engineer and an ethicist, covers ethical dilemmas that any engineer might encounter on the job, emphasizing the responsibility of a practicing engineer to act in an ethical manner. To illustrate the complexities involved, the authors present characters who encounter situations that test the engineering code of ethics. The dialogue between the characters highlights different perspectives of each dilemma. As they proceed through the book, students see how the code of ethics can help (...) in decision making, as well as the implications of various decisions. The philosophical theory that supports the ethical situations encountered is presented as boxed material following each section. Important Notice: Media content referenced within the product description or the product text may not be available in the ebook version. (shrink)

This volume presents twenty-two uncollected philosophical essays by Sir Peter Strawson, one of the leading philosophers of the second half of the twentieth century. The essays (two of them previously unpublished) are drawn from seven decades of work, from 1949 to 2003. They span the broad range of Strawson's work: metaphysics, epistemology, philosophical logic, philosophy of language, ethical theory, and history of philosophy, along with metaphilosophical reflections and intellectual autobiography.

In worlds that lack life, there is no value. For all that, there is no mystery about 'the existence of values in a world of facts'. The world does not consist of facts, rather true descriptions of the world consist of statements of fact. It is as much a fact concerning the world that there are things that are of value to living things, that human beings value things and possess valuable characteristics, perform valuable deeds, stand in valuable relationships to (...) others, as it is a fact that there is life on earth. (shrink)

A critical note on Christopher Bartel and Jack M. C. Kwong, ‘Pluralism, Eliminativism, and the Definition of Art’, Estetika 58 (2021): 100–113. Art pluralism is the view that there is no single, correct account of what art is. Instead, art is understood through a plurality of art concepts and with considerations that are different for particular arts. Although avowed pluralists have retained the word ‘art’ in their discussions, it is natural to ask whether the considerations that motivate pluralism should lead (...) us to abandon art talk altogether; that is, should pluralism lead to eliminativism? This paper addresses arguments both for and against this move. We ultimately argue that pluralism allows one to retain the word ‘art’, if one wants it, but only in a loose, conversational sense. The upshot of pluralism is that talk of art in general cannot be asked to do theoretical and philosophical work. (shrink)

ABSTRACT The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with (...) RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Burma’s Healthcare Under Fire: My Experience as an Exiled Medical ProfessionalP. P. KyawI used to work as a medical doctor in a less developed state than many big cities in Burma1 that experienced prolonged civil wars and current similar atrocities decades before the urban areas of the country experienced them. Before everything started, I was responsible for the medical management of the most vulnerable communities and had been struggling (...) with pandemic-related medical activities. Those were the happiest years of my life. I was with one of the best international organizations, where every effort I made was directly delivered to the patients with no unnecessary paperwork. The system was efficient, my colleagues were supportive, and I had a good work-life balance. I supported my family and whoever needed temporary financial support, played music weekly, met good friends who I hung out with every weekend, and [End Page 164] found hobbies like gardening and crocheting. I was content and happy. I even postponed my plans to get registered as a doctor in the Western world.Before moving to this beautiful ethnic state in 2019, I previously worked as a government medical doctor in Yangon, the capital. As much as I loved working in those civilian hospitals, I could not support myself with a monthly pay of $100-$150 USD. It was a hard decision to leave the service because it meant I could not pursue the medical specialty that I had always longed for and had to leave like-minded supportive colleagues. In Myanmar, unless you are a civil servant, you cannot pursue further clinical specialties. However, after leaving the government’s service to work in humanitarian medical assistance in hard-to-reach areas of Burma, I learned that life is still beautiful outside my comfort zone, until February 2021 when the coup began. Democratically elected members of the country’s ruling party were overthrown by the military, which then bestowed power in a military junta.I expected the election prior to the coup in November 2020 to be an uphill battle for Burma, but nothing more. I was still in denial when I first heard the news from one of the town’s NGO staff. The person had to travel on a motorbike to inform everyone that the junta had staged the coup. No telephone or internet was working at that time. My colleagues and I cried in our office, saying, “We are so young, and the future is still ahead. I don’t think this is going to last long. Maybe it will be over in a few days or, at most, a few weeks.” Once the peaceful protests started nationwide, my friends and I provided medical cover for the protesters, initially for minor medical problems such as low sugar, low blood pressure, injuries from accidental minor slips and falls, etc. Never in my life had I imagined that I would be taking care of bullet wounds and people injured by live rounds. While learning about gunshot wounds in forensic medicine, I thought, “Oh, this is not going to be very useful because Burma is not America, and I am not going there.” Then suddenly, it became too real and more useful than I would’ve liked it to be.I always think back to one especially bloody day when many people in the town were shot with live rounds. We assisted many patients. Usually, we would go around with the protest groups until they were over in the late afternoon. The protesters were always peaceful. There were no riots, no harmful acts, or vandalism. Only when the protesters were cruelly dispersed with tear gas, high-pressure pumps, rubber bullets, and live rounds (to the head) did they decide to defend themselves while still making their voices heard. The only defenses people had to counteract the live rounds were things like metal covers, firecrackers, and slingshots.One afternoon in March 2021, my team and I took an early break for lunch—unaware that some people would lose their lives that afternoon. We followed the local protests through Facebook Live while having lunch and started to hear firecracker sounds. A few seconds later, we knew... (shrink)

Divided into eight sections, each with introductory essays, the selections offer rich and detailed insights into a diverse multinational philosophical landscape. Revealed in this pathbreaking work is the way in which traditional philosophical issues related to ethics, metaphysics, and epistemology, for instance, take on specific forms in Africa's postcolonial struggles. Much of its moral, political, and social philosophy is concerned with the turbulent processes of embracing modern identities while protecting ancient cultures.

" In a book that seeks to shift the ground of debate within theory of knowledge, William P. Alston finds that the century-lo.

Originally published in 1957, The Uniqueness of the Individual is a collection of 9 essays published from the ten years preceding publication. The essays deal with some of the central problems of biology. These are among the questions put and answered from the standpoint of modern experimental biology. What is ageing and how is it measured? What theories have been held to account for it, and with what success? Did ageing evolve, and if so how? Is Lamarckism and adequate explanation (...) of evolutionary process? Does evolution sometimes go wrong? Do human beings evolve in a way peculiar to themselves? Other essays touch upon the problems of scientific method and of growth and transformation. This book will be of interest to natural historians, evolutionists and anthropologists. (shrink)

The experimental study of the emotions as pursued by LeDoux and Damasio is argued to be flawed as a consequence of the inadequate conceptual framework inherited from the work of William James. This paper clarifes the conceptual structures necessary for any discussion of the emotions. Emotions are distinguished from appetites and other non-emotional feelings, as well as from agitations and moods. Emotional perturbations are distinguished from emotional attitudes and motives. The causes of an emotion are differentiated from the objects of (...) an emotion, and the objects of an emotion are distinguished into formal and material ones. The links between emotions and reasons for the emotion, for associated beliefs and for action are explored, as well as the connection between emotion and care or concern, and between emotion and fantasy. The behavioural criteria for the ascription of an emotion are clarified. In the light of this conceptual network, Damasio’s theory of the emotions is subjected to critical scrutiny and found wanting. (shrink)

A needs assessment survey of ethics review committees (ERCs) across Africa was conducted in order to establish their major needs and areas of weaknesses in terms of ethical review capacity. The response rate was 84% (31 of 37 targeted committees), and committees surveyed were located in 18 African countries. The majority of the responding committees (61%) have been in existence between 5 and 10 years; approximately 74% of the respondents were institutional committees, with the remainder being either national (6/31) or (...) regional (2/31). In terms of the ethical review process, nine of the 31 committees that responded did not have standard operating procedures (SOPs), and seven of the 22 that did have SOPs had never revised them after their initial development (an average period of three years). Of the 31 committees, 10 operated without any ethical guidelines. Many of the committees (13/30) met once per month, and the number of proposals reviewed annually varied, ranging from five to over 100. All respondents relied on paper-based data management and archiving systems. Overall, the survey identified the major constraints on ERCs as lack of office equipment, outdated or lack of SOPs, lack of electronic data management systems, inadequate resources, lack of or insufficient expertise on the committees, and poor recognition of the importance of the role of the committees. Consequently, the authors are addressing the identified needs and weaknesses through the Bill and Melinda Gates Foundation-funded capacity building project. The impact of the intervention project will be assessed during and at the end of the four-year longitudinal project. (shrink)