In recent years, there has been an upsurge in the number of civilian resistance movements (CRMs) within states to counter government repression and coups d’états through which civilians are on the frontlines of state brutality and mass atrocities. This article considers the implications of CRMs for atrocity prevention and the associated responsibility to protect norm by asking, Should the international community support CRMs as part of its wider commitment to ending mass atrocities? In this article, we evaluate both military and (...) nonmilitary support to CRMs. We argue that in the context of coups and government repression, providing lethal military support to CRMs will often make things worse in terms of atrocity prevention. We however explain that the provision by the international community of nonlethal and nonmilitary support through political recognition, technical assistance, and accountability can yield positive results. We illustrate this argument with the case of Myanmar. (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)

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)

In lieu of an abstract, here is a brief excerpt of the content:The Problem with BreathÉglantine Colon (bio)On day 1, when my comrades and I talked about it, we couldn't quite figure out how it happened. It just seemed as though we had suddenly been incited not to communicate or enact our love for each other. This time, no policy had been formulated, no law had been issued. It was harder than usual to locate where, to which parts of the (...) apparatus, we should direct our attention.On day 2, we were at a loss. We had gotten so good at reading the apparatus. We had developed wonderfully efficient techniques of resistance. Each and every one of us had become most brilliant at crafting discrete gestures of love. On day 3 onwards, we were misfiring on a regular basis, falling in and out of love with the same wrong comrades, over and over again, and always out of sync. The loving gestures we composed were barely legible and when we would intuitively find a genre in which to communicate our love, something would inevitably break down. Voices, generally. Sometimes the entire figurative system. Bodies, always. We would lose sleep and appetite over love and get useless for weeks.And then, the problem with love became a problem with breath. On day 6, the air got hot and busy with ashes and all sunsets turned red. At every breath, for all we knew, we could be inhaling particles of carbonized pine sap, debris of melted trailer parts, or burnt baby birds in bits. I quit smoking. I bought boxes of white masks at the construction store. The dominant smell during these days was a cagey mix of ghost paint, polymer fibers, and dry chemistry.On day 17, the air got cold and saturated with drops of viral poison. The city shut down. An incredibly sad number of lungs, too. The perspective to live in pods and die alone, disconnected from each other's breath, hyper-connected to life-support machines, plunged many of us, myself included, into brand new strands of historical despair. For those of us whose lungs had been weakened by bad inner-city fumes, evil chemicals, or entire centuries of racialized exposure to horrendous air quality, the problem with breath became plain lethal.Our neighborhoods were saturated with wildfire smoke and unnecessary death. Elsewhere, the streets were not empty. And when I say not empty, I mean they were just not. Or not yet. Usual metallic densities on the bridge. Geometrical glows of digital light in the underground. [End Page 237]Abnormally, no bodies of any ancestries were being captured, or hanged, or tortured, or kneeled upon. Nothing tangible, nothing blatantly repressive this time. No gas, no gag, no name, no whip, no rope. No strangulating remnant of sovereignty within no softness of biopower. A racist and classist brand of distributive pneumocracy is what it was, or at least this is how it initially appeared.On day 25, "Critical Pandemic Studies" became a thing, and "Pod Theory" a subgenre in post-social anthropology. Denounced as a "white fantasy of networked individualism," (in one of its purest forms) as "domestic fascism dressed as elective affinity," the pod appeared to us, from the get-go, as a thoroughly ratchet social formation. On day 29, the "podtag" emerged as a timely intervention in existing forms of street art. Equational in its form, efficient in its power of evocation, and satirical in its poetic economy, the podtag proliferated on the privatized walls of neighborhoods where the biggest challenges presented to breathing were unreasonably difficult Pilates classes on Zoom. Click for larger view View full resolutionOn day 35, the air got complex and full of knots, so striated that we could no longer count on our capacity to share the same air. A meal was being cooked, an instrument was being played, a child was given birth to, and suddenly the rhythm of all breaths would break. Sometimes a pair of lungs would refuse, stubbornly, to take in any oxygen until someone else's pair of lungs had released its own dose of carbon dioxide. At other times, the quantity of air available to each one of us would decrease with... (shrink)

Nearly twenty years after SubStance devoted a special issue to the contemporary French writer we know as Antoine Volodine, we are thoroughly pleased to be publishing in this issue the opening of Dondog, a novel that Ben Streeter has translated with inspired exactitude and brilliant tonal precision. In English or in French, entering Dondog is not unlike entering any other "post-exotic" text. One has to learn how to orient oneself to the ruination of Modernity, within the dysfunctional memories of post-traumatic (...) subjects, between dark humor and luminous despair, in the liminal space between life and death, between humanity and animality, and, in the odd beauty... (shrink)

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.

Population biobanks are an increasingly important infrastructure to support research and will be a much-needed resource in the delivery of personalised medicine. Artificial intelligence (AI) systems can process and cross-link very large amounts of data quickly and be used not only for improving research power but also for helping with complex diagnosis and prediction of diseases based on health profiles. AI, therefore, potentially has a critical role to play in personalised medicine, and biobanks can provide a lot of the necessary (...) baseline data related to healthy populations that will enable the development of AI tools. To develop these tools, access to personal data, and in particular, sensitive data, is required. Such data could be accessed from biobanks. Biobanks are a valuable resource for research but accessing and using the data contained within such biobanks raise a host of legal, ethical, and social issues (ELSI). This includes the appropriate consent to manage the collection, storage, use, and sharing of samples and data, and appropriate governance models that provide oversight of secondary use of samples and data. Biobanks have developed new consent models and governance tools to enable access that address some of these ELSI-related issues. In this paper, we consider whether such governance frameworks can enable access to biobank data to develop AI. As Italy has one of the most restrictive regulatory frameworks on the use of genetic data in Europe, we examine the regulatory framework in Italy. We also look at the proposed changes under the European Health Data Space (EHDS). We conclude by arguing that currently, regulatory frameworks are misaligned and unless addressed, accessing data within Italian biobanks to train AI will be severely limited. (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.

A multitude of legislation impacts the use of samples and data for research in South Africa. With the coming into effect of the Protection of Personal Information Act No. 4 of 2013 in July 2021, recent attention has been given to safeguarding research participants’ personal information. The protection of participants’ privacy in research is essential, but it is not the only risk at stake in the use and sharing of personal information. Other rights and interests that must also be considered (...) and safeguarded include the right to non-discrimination, the right to dignity, and the right to enjoy the benefits of scientific progress. This can be achieved by ensuring that the ethical values and universal principles that underpin the research landscape, namely equity, reciprocity, justice and solidarity, are embedded in the regulatory framework for the management and use of personal information. This paper advocates an integrated bioethics approach to the use of personal information for research in SA. A key feature in embedding such an approach is a Data Transfer Agreement that appropriately integrates the safeguards and protections set out by our regulatory framework with bioethical rules and procedures when personal information is used and shared for research purposes. This paper thus calls for the development of a national DTA that is guided by key ethical principles when data are shared for research purposes. This paper will be followed by a webinar on 23 June 2022 hosted by the Department of Science and Innovation and the SA Medical Research Council, where the recommendations and suggestions set out herein will be unpacked, discussed and debated by relevant stakeholders. (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)

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)

This article compares two contemporary rhetorical figures: the ‘internet troll’, a name invoked to represent a variety of offensive and disturbing online discourse, and the narrator and main character of avant-garde English author Tom McCarthy’s debut novel Remainder. By thinking about how these two figures relate to Levinas’ brand of deconstructive ethics, I attempt to develop an idea about how global communication technology bends our perception and performance of what is ethical. Both the troll and McCarthy’s narrator represent the necessity (...) of understanding in a world caged in technical language describing itself. And at the same time, each figure will be shown to represent the motivating force of a global society that strives for total understanding: an absence of understanding, or in Levinasian terms, the face of the other. (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.

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)

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)

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)

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)

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)

Annawe live where people used to keep cowsin a stifling polyethylene sunwe make holes for love therewhen the water is high we walk on itfrom the bed to the chair then the windowsillthere we hang like rags on the edge of lightonce we woke in history melancholycan't fall back asleep circumambulatelike a child's sobs in a dead bellywar: the worst day of my lifeTatyanacurfew cage bars are made of waxwhen we set ourselves on fire, the light goes on in the (...) houselike a sunflower on the pan of a deep fieldit's as if we were still alive but then night deliversthe viper of the widow's ribbon under every doorlet them get up and go, it's not about the eyes of othersour faces are under the washed-out water of tearsbut they don't go we don't goit is where thyme once was picked up and memory grewgathering songs in tufts of hair, the sacks of Augustwere pregnant with hope for a new summerwhere we still speak for ourselveslet them get up and go, our time is running outleaving sand on things so they get water back laterwe outlive ourselves, we hold the earth by the throatlike the bird of an old love on the lining of a fashionable dressTamarathey just came and shut the passage of flowering timeinto a nailed-up victory box, as if we were snow dyingin the arms of cut-down apple trees in a cesspool of guiltnow my man and I go to get our pensions like cons off to rollcallbut even there they say: special people live in Donetsk:here you would say: and their special gods:occupation: its shimmering rhythm keeps trouble at baysilence: its dirty threads stitch up everyone's mouthswith porous fingers of laughter, from ear to eara train forgets itself and digs into the groundit's making to remember passenger lovesdoesn't know why it's here and what to do with so many namesFainathe rotten cabbage of despair knocks at the doorof invisible night with its severed head, the world still like waterscorched by screams a bird's throat makes threatswhile we go down into memory deeper and deeperwhile we root out the weeds of languagelike eglantine wind from a wound in the landscapepast the gates of death, empty nests of rootsstone light over the great junkheap of loveinfantile fears in the frozen cradle of breathwe leave lists of traces like snow in the marginsstained with blood of freedom from textualitythey will someday return home with our traces, the treesbeasts squint there from the swings of fire and guiltthey laugh over the ravine of this shameful feastthey don't feel the ground shifting beneath themin a long echo's noose tolls the hollow heartFor Oleh Kotsarevwe shall inter civilization in the woodsso that the waking sunhears the green record of sunrisenaked enter the running dance circlebreak into the childish laughter of natureearth shall not know earth in the mirror of our movementsearth shall not know us everso water leaving the memories of fireplace beaststurns to snow in the see-through cupped hands of cloudsso trees pushing roots into rainturn to sky in the arms of birdswe are not afraid, we shall say,to be or not to be in the umbilical cord of timewe shall tie together white kerchiefs of tears in the house of love. (shrink)

Zusammenfassung To Paul Meyer and Les Films de l’Églantine, Belgium Paul Meyer, filmmaker and documentarist, born September 29, 1920, died September 29, 2007 in Belgium. He had his own production company Les films de l´églantine in his hometown Barchon, Belgium. Due to lucky circumstances, I met him during the French Film Festival, Tübingen, in 1995 and am still in possession of a personal hand-written letter from him, dated August, 1995. Our talk is documented in Blickpunkt: Film of 17th July, 1995. (...) Der Beitrag beschreibt am Beispiel von vier Dokumentarfilmen exemplarisch die Arbeit und das Werk von Luigi di Gianni, einem wichtigen Vertreter visueller Anthropologie in Europa, Schüler von Ernesto de Martino und Paul Meyer. Die Arbeiten zeigen therapeutische Riten süditalienischer Volksreligiosität aus der Zeit zwischen den fünfziger Jahren bis in die erste Dekade des 21. Jahrhunderts hinein und würdigen das Werk di Giannis in seiner bisher vernachlässigten Bedeutung für die Religionswissenschaft und die Europäische Religionsgeschichte. (shrink)