Biological sample and data transfer within and out of Africa is steeped in controversy With the H3Africa project now aiming to establish biobanks in Africa, it is essential that there are ethical and legal governance structures in place to oversee the operation of these biobanks. Such governance is essential to ensuring that donors are protected, that cultural perspectives are respected and that researchers have a ready availability of ethically sourced biological samples.

Background:A high prevalence of cognitive impairment and frailty complicates the feasibility of advance care planning in the long-term-care population.Research aim:To identify challenges in implementing the ‘Let Me Decide’ advance care planning programme in long-term-care.Research design:This feasibility study had two phases: (1) staff education on advance care planning and (2) structured advance care planning by staff with residents and families.Participants and research context:long-term-care residents in two nursing homes and one community hospital.Ethical considerations:The local research ethics committee granted ethical approval.Findings:Following implementation, over (...) 50% of all residents had completed some form of end-of-life care plan. Of the 70 residents who died in the post-implementation period, 14% had no care plan, 10% (with capacity) completed an advance care directive and lacking such capacity, 76% had an end-of-life care plan completed for them by the medical team, following discussions with the resident (if able) and family. The considerable logistical challenge of releasing staff for training triggered development of an e-learning programme to facilitate training.Discussion:The challenges encountered were largely concerned with preserving resident’s autonomy, avoiding harm and suboptimal or crisis decision-making, and ensuring residents were treated fairly through optimisation of finite resources.Conclusions:Although it may be too late for many long-term-care residents to complete their own advance care directive, the ‘ Let Me Decide’ programme includes a feasible and acceptable option for structured end-of-life care planning for residents with variable capacity to complete an advance care directive, involving discussion with the resident (to the extent they were able) and their family. While end-of-life care planning was time-consuming to deliver, nursing staff were willing to overcome this and take ownership of the programme, once the benefits in improved communication and enhanced peace of mind among all parties involved became apparent in practice. (shrink)

Research, innovation, and progress in the life sciences are increasingly contingent on access to large quantities of data. This is one of the key premises behind the “open science” movement and the global calls for fostering the sharing of personal data, datasets, and research results. This paper reports on the outcomes of discussions by the panel “Open science, data sharing and solidarity: who benefits?” held at the 2021 Biennial conference of the International Society for the History, Philosophy, and Social Studies (...) of Biology, and hosted by Cold Spring Harbor Laboratory. (shrink)

Although scholars continue to debate the influence of social media on body image, increased social media use, especially engaging in appearance-related behaviors may be a potential risk factor for body dissatisfaction in adolescents. Little research has investigated how adolescents process appearance-related content and the potential strategies they use to protect body image perceptions on social media. To investigate coping strategies used by adolescents, four qualitative focus groups were conducted with 29 adolescents aged 15–16 years in mixed-gender Irish secondary schools. Thematic (...) analysis revealed that adolescents employed many different behavioral strategies such as avoiding negative content and selecting positive content. Cognitive processing strategies such as critically evaluating body-related content, psychologically distancing from and positively reframing challenging content were also used, although less frequently. Boys appeared to exhibit greater positive agency over their bodies and social media use and tended to use more active coping styles than girls. Efforts to promote body image on social media such as body positive pages and exposing artificial social media content were considered limited in their effectiveness. (shrink)

Internationally, the need to advance science, technology, engineering and mathematics education is recognized as being vital for meeting social and economic challenges and developing a scientifically, mathematically, and technologically literate citizenry. In many countries, however, there are gender differences in the participation and achievement of girls and women in STEM education and STEM careers, usually to the disadvantage of females. This paper aims to identify challenges to female students’ participation in STEM both at post-primary level and beyond in the Irish (...) context. The research questions we aim to address in this paper are: what are student attitudes towards science, technology, engineering and mathematics as measured through interest and perceived ability in STEM, students’ valuing of STEM and students’ commitment to STEM? and what gender differences occur regarding students’ attitudes to science, technology, engineering and mathematics? A survey was completed by 308 post-primary students in Ireland as part of a one-year research project titled “STEMChAT: Women as catalysts for change in STEM education.” Data analysis compiled descriptive statistics, including response frequencies and percentages and median and interquartile range values, and compared gender differences in survey responses using the Kruskal–Wallis H Test. Results indicated that female students had significantly more positive attitudes to science compared to males while in comparison, males had significantly more positive responses to mathematics compared to females. Challenges regarding access to and understanding of STEM in the context of post-primary education are discussed. (shrink)

The ability to learn cause–effect relations from experience is critical for humans to behave adaptively — to choose causes that bring about desired effects. However, traditional experiments on experience-based learning involve events that are artificially compressed in time so that all learning occurs over the course of minutes. These paradigms therefore exclusively rely upon working memory. In contrast, in real-world situations we need to be able to learn cause–effect relations over days and weeks, which necessitates long-term memory. 413 participants completed (...) a smartphone study, which compared learning a cause–effect relation one trial per day for 24 days versus the traditional paradigm of 24 trials back- to- back. Surprisingly, we found few differences between the short versus long timeframes. Subjects were able to accurately detect generative and preventive causal relations, and they exhibited illusory correlations in both the short and long timeframe tasks. These results provide initial evidence that experience-based learning over long timeframes exhibits similar strengths and weaknesses as in short timeframes. However, learning over long timeframes may become more impaired with more complex tasks. (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)

ABSTRACTGiven the centrality of corporations in distribution of income and wealth studies, discursive constructions of corporate taxation are essential to understanding the production of inequality. The focus of this study is an interview with Apple’s Chief Executive Tim Cook on the Irish state broadcaster, Raidió Teilifís Éireann’s flagship news programme, Morning Ireland, following the ruling by the European Commission on the corporation tax arrangements between Apple Inc. and Ireland. Drawing on a Critical Discourse Analysis approach, a frame analysis is provided. (...) The significance and extent of the EC’s ruling has potential implications for corporation taxation policy, within and beyond the European Union, which provides a timely reflection in the Brexit era and in the context of rising economic nationalism generally. Thus, the discursive construction of this ruling in the media is of importance in understanding how inequality is produced and reproduced, and journalism’s role therein. (shrink)

Organ transplantation has been central to debates on medical technologies and their complex biopolitical consequences, new forms of medical governance and new opportunities for capital. Attending to transplantation has also opened up new ways of thinking about, acting on and living ‘in’ the body, raising important questions about what it means to be embodied under particular cultural conditions. The specific ways in which a technology like transplantation puts the body parts of some at the disposal of the bodies of others (...) has served to (re)write bodily boundaries, commoditise body parts and reorganise the social relations of exchange, care and responsibility. The controversies that this family of technologies has given rise to are both readable and read as embedded in and expressive of wider forms of conflict and contestation. Putting these controversies and their entanglements centre-stage, this article focuses on the manner in which transplant technologies construct their publics in gendered and socially stratified terms, as they reconstruct the transplanted organ as a new site for the extraction of surplus value. Drawing on data from fieldwork in Mexico, I will examine the catastrophic consequences of transplant medicine for Mexico’s poor, particularly women who bear the burden of care for the country’s predominantly living transplant programme. In carrying the costs (moral, social and economic) their accounts of these processes offer us an important critical vantage point from which to assess the interplay between state, market and the ‘worn’ body in the context of transplantation. (shrink)

South Africa has made great progress in the development of HIV/AIDS testing, treatment and prevention campaigns. Yet, it is clear that prevention and treatment campaigns alone are not enough to bring this epidemic under control.

Genomic and biobank research has undergone exponential growth in Africa. Traditionally this resulted in exploitative research practices in the form of so-called ‘parachute research’ with little or no consideration for capacity building. However there has been a recent growth of research and consortia where capacity building and equitable research have been a key objective of the research, and attention is now focused on the governance of this research. The importance of solidarity in genomic biobank research in high income countries is (...) well established and such an ethos reflects the communal based worldviews prevalent in many African communities. However, if the governance of the research is to foster equitable research practices, there must be some reciprocal benefit. This chapter will explore the impact that reciprocity will have on solidarity and how this may manifest in a governance framework in Africa. Particular focus will be given to capacity building and benefit sharing to enable the research to develop for the benefit of the local population, in a manner that promotes trust and fairness. This chapter will conclude with some recommendations on how to ensure reciprocity is enshrined in a governance framework for genomic biobank research in Africa. (shrink)

Narratives of the experience of pulmonary tuberculosis are relatively rare in the Irish context. A scourge of the early twentieth century, TB was as much a social as a physically debilitating disease that rendered sufferers silent about their experience. Thus, the personal diaries and letters of Irish poet, Seán Ó Ríordáin, are rare. This article presents translations of his personal papers in a historico-medical context to chronicle Ó Ríordáin’s experience of a life marred by respiratory disease. Familiar to generations of (...) schoolchildren are his imaginative poems, whose lively metre punctuated the Irish language curriculum from primary through to secondary schooling; for most they leave an indelible mark. Such buoyant poems however belie the reality of his existence, lived in the shadow of chronic illness, and punctuated with despair over his condition and anxiety about the periods of extended sick leave his illness necessitated. Although despair dominated his diaries and he routinely begged God, Mary, the Saints and the devil for death, they were also the locus where his creativity developed. In his diaries, caricatures of friends and sketches of everyday things nestle among the first lines of some of his most influential poems and quotes from distinguished philosophers and writers. Evocative and tragic, his diaries offer a unique prism to the experience of respiratory disease in Ireland. (shrink)

Previous research has successfully used feature integration theory to operationalise the predictions of Perceptual Load Theory, while simultaneously testing the predictions of both models. Building on this work, we test the extent to which these models hold up in a 3D world. In two experiments, participants responded to a target stimulus within an array of shapes whose apparent depth was manipulated using a combination of monoscopic and stereoscopic cues. The search task was designed to test the predictions of feature integration (...) theory, as the target was identified by a single feature or a conjunction of features and embedded in search arrays of varying size, and perceptual load theory, as the task included congruent and incongruent distractors presented alongside search tasks imposing high or low perceptual load. Findings from both experiments upheld the predictions of feature integration theory, regardless of 2D/3D condition. Longer search times in conditions with a combination of monoscopic and stereoscopic depth cues suggests that binding features into three-dimensional objects requires greater attentional effort. This additional effort should have implications for perceptual load theory, yet our findings did not uphold its predictions; the effect of incongruent distractors did not differ between conjunction search trials and feature search trials. Individual differences in susceptibility to the effects of perceptual load were evident and likely explain the absence of load effects. Overall, our findings suggest that feature integration theory may be useful for predicting attentional performance in a 3D world. (shrink)

Psychology has benefited from an enormous wealth of knowledge about processes of cognition in relation to how the brain organizes information. Within the categorization literature, this behavior is often explained through theories of memory construction called exemplar theory and prototype theory which are typically based on similarity or rule functions as explanations of how categories emerge. Although these theories work well at modeling highly controlled stimuli in laboratory settings, they often perform less well outside of these settings, such as explaining (...) the emergence of background knowledge processes. In order to explain background knowledge, we present a non-similarity-based post-Skinnerian theory of human language called Relational Frame Theory which is rooted in a philosophical world view called functional contextualism. This theory offers a very different interpretation of how categories emerge through the functions of behavior and through contextual cues, which may be of some benefit to existing categorization theories. Specifically, RFT may be able to offer a novel explanation of how background knowledge arises, and we provide some mathematical considerations in order to identify a formal model. Finally, we discuss much of this work within the broader context of general semantic knowledge and artificial intelligence research. (shrink)

Carnage in the classroom, misogynists in high office, sociopaths in uniform, masculinity is a killer. From styles of dress to the stunted capacity for expressing a diversity of emotions, becoming a man involves killing off and repudiating anything that in our society is held as feminine. When a person is unable to show compassion and tenderness, or when exposed for their frailties, feels angry and humiliated, they have problems. Problems that none of us are immune to. Masculinity, Cremin provocatively declares, (...) is a generic disorder of a sick society that afflicts even the best of us. Neither a condition of being human nor even of male, it is a disorder, as she illustrates, of a capitalist society that depends and even thrives upon its very symptoms. From the perspective of a trans woman raised to be a man, the book maps the disorder and speculates on the possible means to overcome it. Instead of signifying weakness, catastrophes can be prevented when the qualities men often fear and women often feel subordinated to are prioritised, affirmed and nourished. Drawing, amongst others, on Marx and Freud, Cremin eloquently demonstrates why there can be no future other than one in which we are all reconciled as a society with the feminine. In such a future, the terms 'masculine' and 'feminine' will neither define us nor determine our relationship to one another. (shrink)

Si le développement du web a rendu accessibles des masses de données numériques, facilitant la collecte de textes et le développement de corpus, il a également donné naissance à de nouveaux genres qui défient les représentations, les méthodes et les grilles d’analyses développées jusqu’à présent. Ainsi a-t-on vu apparaître des corpus assez éloignés des premiers corpus écrits traditionnels, regroupés sous la bannière de la CMR (Communication Médiée par les Réseaux / Computer-Mediated Communica...

Le présent article se propose de revenir sur le projet national CoMeRe (Communication Médiée par les Réseaux) en insistant sur la complexité du corpus développé. Constitué de quatorze sous-corpus variés, le corpus CoMeRe est un corpus de référence de la communication médiée par les réseaux en français. Quatorze enseignants-chercheurs de huit laboratoires différents se sont impliqués dans le projet et ont été guidés par trois mots clés lors de leurs collaborations : variété, standards et accès ouvert.Le corpus CoMeRe a ainsi (...) été construit sur une hypothèse de variété et contient une gamme étendue d’interactions de la CMR dont nous restituons les différences et les caractéristiques principales (courriels, clavardage, SMS, forums de discussion Internet, blogs, tweets, discussions Wikipédia, interactions provenant de mondes synthétiques). Nous détaillons ensuite comme le corpus CoMeRe a été rendu interopérable : les quatorze sous-corpus ont été standardisés, suivant le modèle de l’espace d’interaction élaboré lors du projet (Chanier & Jin, 2013) d’une part et suivant les propositions de représentation standardisée des corpus de la CMR en TEI (Text Encoding Initiative, 2019) élaborées en lien avec les partenaires européens. Enfin, les collègues tenaient à diffuser le corpus en accès ouvert pour permettre son utilisation par la communauté scientifique. Nous revenons sur les retombées du projet liées à la diffusion du corpus dans la conclusion de notre article. (shrink)

Bd. 1. Einleitung in die Geisteswissenschaft. 2. Aufl.--Bd. 2. Weltanschauung und Analyse des Menschen seit Renaissance und Reformation.--Bd. 3. Studien zur Geschichte des deutschen Geistes.--Bd. 4. Die Jugendgeschichte Hegels und andere Abhandlungen zur Geschichte des deutschen Idealismus.--Bd. 5-6. Die Geistige Welt.--Bd. 7. Der Aufbau der geschichtlichen Welt in den Geisteswissenschaften.--Bd. 8. Weltanschauungslehre.--Bd. 9. Pädagogik.--Bd. 10. System der Ethik.--Bd. 11. Vom Aufgang des geschichtlichen Bewussteins.--Bd. 12. Zur preussischen Geschichte.

Consent processes for clinical trials involving HIV prevention research have generated considerable debate globally over the past three decades. HIV cure/eradication research is scientifically more complex and consequently, consent processes for clinical trials in this field are likely to pose a significant challenge. Given that research efforts are now moving toward HIV eradication, stakeholder engagement to inform appropriate ethics oversight of such research is timely. This study sought to establish the perspectives of a wide range of stakeholders in HIV treatment (...) and research to inform consent processes for cure research. In total, 68 South African stakeholders participated in two qualitative research modalities. In-depth interviews were conducted with a purposive sample of 42 individuals - audiotaped with consent. Twenty-six stakeholders participated in three focus group discussions. Thematic analysis of transcribed IDIs and FGDs was conducted. The majority of respondents indicated that there could be unique challenges in HIV cure research requiring special attention. In particular, given the complexity of cure science, translation of concepts into lay language would be critical for potential participants to adequately appreciate risks and benefits in early phase research with experimental interventions. Furthermore, to aid understanding of risks and benefits against a background of desperation for a cure, specially trained facilitators would be required to assist with a psychological assessment prior to consent to avoid curative misconceptions. Long-term participant engagement to assess durability of a cure would mean that the consent process would be prolonged, necessitating annual re-consent. Building trust to maintain such long-term relationships would be critical to retain study participants. Unique consent requirements for cure research in South Africa would include significant efforts to maximise understanding of trial procedures, risks and the need for long-term follow-up. However, the psychological dimension of cure must not be underestimated. Beyond an understanding of cure science, the emotional impact of HIV cure advances the discourse from cure to healing. Consequently, the consent process for cure research would need to be enhanced to include psychological support and counselling. This has several important implications for research ethics review requirements for consent in HIV cure research. (shrink)

Anzeige für das Litterarische Centralblatt, von E. Rohde.--Anzeige in der Norddeutschen Allgemeinen Zeitung vom 26. Mai 1872, von E. Rohde.--Zukunftsphilologie! Von U. von Wilamowitz-Möllendorff.--An Friedrich Nietzsche, von R. Wagner.--Afterphilologie, von E. Rohde.--Zukunftsphilologie! Von U. von Wilamowitz-Möllendorff.

The Historical Dictionary of Philosophy, the _Historisches Wörterbuch der Philosophie _, is distinguished by its particular presentation of philosophical terms, ideas and concepts. Rather than providing mere defintions or descriptive and analytical explanantions the _HWPh_ strictly applies the critical method of history of concepts developed by the eminent German scholar and philosopher Joachim Ritter. By means of precise and detailed references it documents the origin, first occurrence, the historical evolution and the changes of meaning of each concept, from Ancient Greek (...) to contemporary philosophy. For the reader this presentation is of unique value: it makes traceable the importance of terms and concepts at certain periods or for a particular philosopher, as well as its changes and development of meaning. Volume 13 includes, besides of a comprehensive introductory essay, three different indexes: - the Subject Index classifies the articles by disciplinary and systematic categories - the Main Index includes all philosophical keywords with more than 30.000 references to their occurrences in other articles and contexts - the Author Index lists all authors and their contributions The included CD-ROM allows full text research of the _HWPh's_ entire content. (shrink)

The Historical Dictionary of Philosophy, the _Historisches Wörterbuch der Philosophie,_ is distinguished by its particular presentation of philosophical terms, ideas and concepts. Rather than providing mere defintions or descriptive and analytical explanantions the _HWPh_ strictly applies the critical method of history of concepts developed by the eminent German scholar and philosopher Joachim Ritter. By means of precise and detailed references it documents the origin, first occurrence, the historical evolution and the changes of meaning of each concept, from Ancient Greek to (...) contemporary philosophy. For the reader this presentation is of unique value: it makes traceable the importance of terms and concepts at certain periods or for a particular philosopher, as well as its changes and development of meaning. (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 medical stimulants to sustain attention, augment memory and enhance intellectual capacity is increasing in society. The use of Methylphenidate for cognitive enhancement is a subject that has received much attention in the literature and academic circles in recent times globally. Medical doctors and medical students appear to be equally involved in the off-label use of Methylphenidate. This presents a potential harm to society and the individual as the long-term side effect profile of this medication is unknown.

Despite the growth of philosophy for/with children over the last five decades, its legitimacy remains contested. Key themes within the P4C literature are the potential learning outcomes for children as well as possible personal and professional development benefits for those that teach it. The literature on the former, while extensive, presents a mixed picture and highlights the challenges inherent in determining the impact of P4C on learning outcomes. The literature on the latter, while little explored, may provide valuable insights for (...) teacher professional development. Unlike much of the literature, this paper examines the impact of P4C from the P4C educators’ perspective. The paper presents the findings from a pilot study of volunteer teachers with the Primary Ethics program in Sydney, Australia. Two key findings emerged. First, ethics teachers felt they were making a material and positive difference to the children they taught, which included: the development of critical thinking and reasoning skills; increased confidence to express themselves; and enjoyment derived from class discussions. Second, teachers that use a philosophical and a community of inquiry approach with their students may themselves become more reflective and engage in critical thinking and ethical reasoning. (shrink)

The Historical Dictionary of Philosophy, the _Historisches Wörterbuch der Philosophie,_ is distinguished by its particular presentation of philosophical terms, ideas and concepts. Rather than providing mere defintions or descriptive and analytical explanantions the _HWPh_ strictly applies the critical method of history of concepts developed by the eminent German scholar and philosopher Joachim Ritter. By means of precise and detailed references it documents the origin, first occurrence, the historical evolution and the changes of meaning of each concept, from Ancient Greek to (...) contemporary philosophy. For the reader this presentation is of unique value: it makes traceable the importance of terms and concepts at certain periods or for a particular philosopher, as well as its changes and development of meaning. Voulmes 1–12 of the _HWPh_ comprises more than 17.000 text columns on 3.670 philosophical terms. The dictionary does not include articles on persons. Volume 13 includes, besides of a comprehensive introductory essay, three different indexes: - the Subject Index classifies the articles by disciplinary and systematic categories - the Main Index includes all philosophical keywords with more than 30.000 references to their occurrences in other articles and contexts - the Author Index lists all authors and their contributions The included CD-ROM allows full text research of the _HWPh's_ entire content. (shrink)

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...) meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)

BackgroundThe ethical concerns associated with HIV prevention and treatment research have been widely explored in South Africa over the past 3 decades. However, HIV cure research is relatively new to the region and significant ethical and social challenges are anticipated. There has been no published empirical enquiry in Africa into key informant perspectives on HIV cure research. Consequently, this study was conducted to gain preliminary data from South African HIV clinicians, researchers and activists.MethodsIn-depth interviews were conducted on a purposive sample (...) of fourteen key informants in South Africa. Audiotaped interviews were transcribed verbatim with concurrent thematic analysis. The perspectives of HIV clinicians, researchers and activists were captured. Analyst triangulation occurred as the data were analysed by three authors independently.ResultsThe rapid evolution of HIV cure research agendas was prominent with participants expressing some concern that the global North was driving the cure agenda. Participants described a symbiotic relationship between cure, treatment and prevention research necessitating collaboration. Assessing and managing knowledge and expectations around HIV cure research emerged as a central theme related to challenges to constructing ‘cure’ - how patients understand the idea of cure is important in explaining the complexity of cure research especially in the South African context where understanding of science is often challenging. Managing expectations and avoiding curative misconception will have implications for consent processes. Unique strategies in cure research could include treatment interruption, which has the potential to create therapeutic and ethical conflict and will be perceived as a significant risk. Ethical challenges in cure research will impact on informed consent and community engagement.ConclusionsIt was encouraging to note the desire for synergy amongst researchers and clinicians working in the fields of prevention, treatment and cure. Translation of complex HIV cure science into lay language is critical. Moving forward, RECs must be adequately constituted with scientific expertise and community representation when reviewing cure protocols. It is hoped that knowledge and resource sharing in the context of collaboration between research scientists working in cure and those working in treatment and prevention will accelerate progress towards cure. (shrink)

Military metaphors are pervasive in biomedicine, including HIV research. Rooted in the mind set that regards pathogens as enemies to be defeated, terms such as “shock and kill” have become widely accepted idioms within HIV cure research. Such language and symbolism must be critically examined as they may be especially problematic when used to express scientific ideas within emerging health-related fields. In this article, philosophical analysis and an interdisciplinary literature review utilizing key texts from sociology, anthropology, history, and Chinese and (...) African studies were conducted to investigate the current proliferation of military metaphors. We found the use of these metaphors to be ironic, unfortunate, and unnecessary. To overcome military metaphors we propose to give them less aggressive meanings, and/or replace them with more peaceful metaphors. Building on previous authors' work, we argue for the increased use of “journey” metaphors as meaningful, cross-culturally app... (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)