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)

Many ethical concerns surrounding human genetics studies remain unresolved. We report here the situation in Cameroon.Objectives: To describe the profile of human genetic studies that used Cameroonian DNA samples, with specific focus on i) the research centres that were involved, ii) authorship, iii) population studied, iv) research topics and v) ethics disclosure, with the aim of raising ethical issues that emerged from these studies.Method: Bibliometric Studies; we conducted a PubMed-based systematic review of all the studies on human genetics that used (...) Cameroonian DNA samples from 1989 to 2009.Results and Discussion: Fifty articles were identified, involving predominantly research centres from Europe (64%) and America (32%). Only 7 (14%) Cameroonian institutions and 14 (28%) Cameroonian authors were associated with these publications.At least 52% of publications were devoted to population genetics (variation/migration patterns) amongst 30 Cameroonian ethnic groups. Very few studies concerned public health related genetic issues and only 5 (10%) references were found for hemoglobinopathies like sickle cell anaemia. Almost all DNA samples are ‘banked’ outside of the African continent.Capacity building, rights to the genetic information and benefits to the individuals, communities and populations who contribute to these studies are addressed.Conclusions: 1) Our data suggests the need for a wider debate towards building capacity and addressing ethical issues related to human genomic research in sub-Saharan Africa and specifically in Cameroon; 2) National ethical guidelines and regulations concerning the collection, use and storage of human DNA are urgently needed in Cameroon. (shrink)

Background A biobank is a structure which collects and manages biological samples and their associated data. The collected samples will then be made available for various uses. The sharing of those samples raised ethical questions which have been answered through specific rules. Thus, a Biobank functioning under tight ethical rules would be immensely valuable from a scientific and an economic view point. In 2009, Côte d’Ivoire established a biobank, which has been chosen to house the regional biobank of Economic Community (...) of West African States countries in 2018. To ensure optimal and efficient use of this biobank, the scientific community must be aware of its existence and its role. It was therefore necessary to evaluate the knowledge of laboratories staff on the role and activities of a biobank. Methods This descriptive study was done by questioning staff from laboratories working on human’s health, animals or plants. The laboratories were located in southern Côte d’Ivoire. Results A total of 205 people completed the questionnaire. Of these 205 people, 34.63% were biologists, 7.32% engineers, 48.78% technicians and 9.27% PhD students. The average length of work experience was 10.11 ± 7.83 years. In this study, 43.41% of the participants had never heard of biobanking. Only 48.78% of participants had a good understanding of the role of a biobank. Technicians and PhD students were less educated on the notion of biobank. Conclusion The level of knowledge of laboratory staff about biobanking needs to be improved. Training on the role, activities and interests of the biobank is important. (shrink)

The enrolment of children and adolescents in health research requires that attention to be paid to specific assent and consent requirements such as the age range for seeking assent; conditions for parental consent (and waivers); the age group required to provide written assent; content of assent forms; if separate assent and parental consent forms should be used, consent from emancipated young adults; reconsent at the age of adulthood when a waiver of assent requirements may be appropriate and the conditions for (...) waiving assent requirements. There is however very little available information for researchers and ethics committees on how to navigate these different issues. To provide guidance to research initiatives, the SickleInAfrica consortium conducted a thematic analysis of a sample of research ethics guidelines and procedures in African countries, to identify guidance for assent requirements in health research. The thematic analysis revealed that 12 of 24 African countries specified the age group for which assent is required. The minimum age for written assent varied across the countries. Five countries, Algeria, Botswana, Cameroon, Nigeria and The Democratic Republic of Congo require consent from both parents/family council in certain circumstances. Botswana, Nigeria, South Africa and Uganda have specific assent/consent requirements for research with emancipated minors. South Africa and Algeria requires re-consent at onset of adulthood. Five countries (Botswana, Cameroon, Nigeria, South Africa and Tanzania) specified conditions for waiving assent requirements. The CIOMS and the ICH-GCP guidelines had the most comprehensive information on assent requirements compared to other international guidelines. An interactive map with assent requirements for different African countries is provided. The results show a major gap in national regulations for the inclusion of minors in health research. The SickleInAfrica experience in setting up a multi-country SCD registry in Africa highlights the need for developing and harmonising national and international guidelines on assent and consent requirements for research involving minors. Harmonisation of assent requirements will help facilitate collaborative research across countries. (shrink)

Sickle cell disease is a debilitating illness that affects quality of life and life expectancy for patients. In Cameroon, it is now possible to opt for termination of an affected pregnancy where the fetus is found to be affected by SCD. Our earlier studies found that, contrary to the views of Cameroonian physicians, a majority of parents with their children suffering from SCD would choose to abort if the fetuses were found to be affected. What have not yet been investigated (...) are the views of people suffering from/living with SCD. We used a quantitative sociological method, with administered structured questionnaires, to study the attitudes of adult patients suffering from SCD on prenatal genetic diagnosis and possible TAP. The majority of the 89 participants were urban dwellers , women , Christian and single , with a secondary/tertiary education . The majority would consider PND for SCD; almost half would reject TAP while 40.9% would consider it. Respondents who rejected TAP claimed mostly ethical reasons while those who found TAP acceptable cited fear of having an affected child and the poor quality of the affected child's health . Cameroonian patients with SCD are generally supportive of PND and a remarkably high number of patients living with SCD reported that they would consider terminating a pregnancy based on their assessment of the future well-being of the child. Research is required to investigate the burden of SCD on families and their quality of life. (shrink)

Qu'est-ce au juste que le mental? Les nouvelles "sciences de l'esprit" ne paraissent pas avoir de doute sur la réponse : c'est ce qu'il y a dans la boîte crânienne. L'idée que le mental puisse être autre chose que le côté "interne" d'une métaphore qui l'oppose à de l'externe, et qu'à ce titre il puisse s'avérer intrinsèquement social, leur paraît incongrue. C'est pourtant cette idée que le présent ouvrage s'applique à défendre. Il élabore une conception sociale du mental, en prenant (...) appui sur les courants de recherche qui, en philosophie et en sciences humaines et sociales, ont souligné, tant d'un point de vue conceptuel qu'empirique, l'imbrication du social et du mental. Cette élaboration passe par une clarification des deux concepts. D'un côté, il est nécessaire de remédier au rétrécissement du social non seulement par les sciences cognitives, mais aussi par une partie des sciences sociales. De l'autre, il faut proposer une nouvelle compréhension de ce que l'on entend par mental. La conception esquissée est une conception qu'on peut qualifier d'adverbiale : "mental" est un concept opératoire qui qualifie une modalité de l'action d'agents appartenant à une société. (shrink)

L’article part d’un constat élémentaire : les phénomènes de patrimonialisation se démultiplient et recouvrent toute sorte de réalités. Dans ce contexte, à côté de la recherche traditionnelle sur les questions de patrimoine, ils invitent à développer ce que dans le monde anglo-saxon de la recherche, on dénomme les heritage studies en mettant tout particulièrement l’accent sur la dimension critique de la recherche. Cette dernière ne doit plus chercher à établir, à consolider ou à préserver des patrimoines existants mais à interroger (...) ce qui fait patrimoine et les raisons pour lesquelles des acteurs se mobilisent et tendent à imposer une valeur symbolique à un objet, à une pratique ou à une coutume, non sans en tirer profit. (shrink)

L’article part d’un constat élémentaire : les phénomènes de patrimonialisation se démultiplient et recouvrent toute sorte de réalités. Dans ce contexte, à côté de la recherche traditionnelle sur les questions de patrimoine, ils invitent à développer ce que dans le monde anglo-saxon de la recherche, on dénomme les heritage studies en mettant tout particulièrement l’accent sur la dimension critique de la recherche. Cette dernière ne doit plus chercher à établir, à consolider ou à préserver des patrimoines existants mais à interroger (...) ce qui fait patrimoine et les raisons pour lesquelles des acteurs se mobilisent et tendent à imposer une valeur symbolique à un objet, à une pratique ou à une coutume, non sans en tirer profit. (shrink)

Charles Travis,Corinne Lajoie,Bruno Ambroise.

Black Knowledges/Black Struggles: Essays in Critical Epistemology explores the central, but often critically neglected role of knowledge and epistemic formations within social movements for human emancipation. This collection examines the systemic connection that exists between the empirical subordination of "Black" peoples globally and the conceptual negation that subordinates or renders this population invisible within the epistemes of the West. The collection recognizes that as peoples of "Black" African and Afro-mixed descent mobilize against their dehumanized status within Western modernity, they are (...) involved in a struggle that is both contemporary and of long standing, one where local and national battles have a global dimension. The essays in this collection foreground the extent to which liberation from imposed subordination necessarily entails critiques of, challenges to, and counter-formulations against the epistemic formations that work to "naturalize" subordination. The essays in the collection engage primarily with knowledge formations and empirical practices generated from within the discourse of "race," but also in its relation to other socio-human discourses of Western modernity. These essays also analyze the critiques, challenges, and counter-knowledge/epistemic formulations put forth by specific individuals, schools, movements, and/or institutions of the "Black" world. Through these examinations, the collection's authors implicitly point towards, and sometimes explicitly take part in, the formulation of a new kind of critical - but also emancipatory - epistemology. What emerges is a more comprehensive view of what it means to be human, an epistemic construction that can serve as an instrument of liberation rather than subordination. (shrink)

A. Reinach et J. Searle sont bien connus pour avoir chacun développé une théorie de la réalité sociale prenant appui sur le cas particulier de la promesse. Celle-ci est vue comme un acte de parole primordial où la relation à l’autre à qui l’on promet est constitutive de l’acte : c’est ce qui fait son caractère social. Cette caractéristique entraîne une véritable objectivité des obligations engendrées. Pourtant, ces similitudes dans l’analyse recouvrent des divergences conceptuelles fortes entre le tenant d’une phénoménologie (...) réaliste découvrant des essences sociales et le théoricien des actes de parole qui propose un constructivisme social.A. Reinach et J. Searle are well-known for both having elaborated a theory of social reality founded on the particular case of promise. This one is seen as a seminal speech act constituted by relationship to other people : hence its social character. This social feature enables the obligations deriving from the promise to get real objectivity. Despite these similarities of analysis, there is strong divergence between the supporter of realistic phenomenology looking for social substances and the speech-act theorist proposing a social constructivism. (shrink)

La philosophie du langage issue du tournant linguistique peut paraitre depassee par la philosophie de l'esprit et les approches cognitivistes. Ce second volume des Textes-cles de philosophie du langage vise, comme le premier, a montrer au contraire la vitalite et la radicalite de la reflexion sur le langage produite au XXe et au XXIe siecles. Le premier envisageait le rapport du langage au monde, les manieres dont le langage peut dire les choses (et le vrai); le second presente diverses manieres (...) de considerer que le langage fait des choses en disant, met en relation des humains dans des contextes, au sein d'une forme de vie humaine et sociale. D'ou le renouvellement des analyses du langage et l'emergence d'une nouvelle discipline, la pragmatique, qui prend en compte des elements du fonctionnement linguistique oublies par les conceptions strictement veri-conditionnelles. Cette philosophie du langage, fondee sur la description des usages ordinaires et la mise en evidence de la dimension praxeologique du langage, n'a cependant pas renonce a la visee realiste du tournant linguistique. On verra que la philosophie du langage ordinaire, dissidente par rapport a la philosophie analytique classique, attentive aux usages et situations, recherche, perfectionne et raffine l'adequation au reel, poursuivie desormais en termes de sensibilite au detail du reel. (shrink)

La philosophie du langage issue du tournant linguistique, apparue avec Frege a l'oree du XXe siecle, peut paraitre depassee de nos jours par la philosophie de l'esprit ou le cognitivisme. Ce volume vise a illustrer au contraire la vitalite et la radicalite des premieres theories de la signification et de la reference. Il parcourt, a travers une serie de textes devenus classiques, l'evolution de la problematique de la signification, sa definition comme mode de presentation de la reference, son explosion avec (...) la these d'indetermination de la traduction. Il analyse les relations du sens avec la verite - selon qu'il en formule les conditions, ou qu'il informe notre approche du monde. Dans les textes de ce volume, c'est l'articulation du langage au reel, du mot a la chose, qui apparait comme l'objet de la philosophie du langage et le lieu de son actualite. (shrink)

This article draws on key normative principles grounded in important values – solidarity, partiality and friendliness – in African philosophy to think critically and deeply about the ethical challenges around returning individual genetic research findings in African genomics research. Precisely, we propose that the normative implication of solidarity, partiality and friendliness is that returning findings should be considered as a gesture of goodwill to participants to the extent that it constitutes acting for their well-being. Concretely, the value of friendliness may (...) imply that one ought to return actionable results to participants even when their preferences regarding feedback are unknown. Notwithstanding, returning individual genetic results will have a cost implication. The cost of feeding back is relevant in the context of African genomics research projects, which are often funded by international sponsors and should be researched further. (shrink)

BackgroundA key ethical question in genomics research relates to whether individual genetic research results should be disclosed to research participants and if so, which results are to be disclosed, by whom and when. Whilst this issue has received only scarce attention in African bioethics discourse, the extension of genomics research to the African continent has brought it into sharp focus.MethodsIn this qualitative study, we examined the views of adolescents, parents and caregivers participating in a paediatric and adolescent HIV-TB genomic study (...) in Botswana on how solidarity and reciprocity obligations could guide decisions about feedback of individual genetic research results. Data were collected using deliberative focus group discussions and in-depth interviews.ResultsFindings from 93 participants demonstrated the importance of considering solidarity and reciprocity obligations in decisions about the return of individual genetic research results to participants. Participants viewed research participation as a mutual relationship and expressed that return of research results would be one way in which research participation could be reciprocated. They noted that when reciprocity obligations are respected, participants feel valued and not respecting reciprocity expectations could undermine participant trust and participation in future studies.ConclusionsWe conclude that expectations of solidarity and reciprocity could translate into an obligation to feedback selected individual genetic research results in African genomics research. (shrink)

Ensemble d'articles fondamentaux en relation avec l'épistémologie, l'ontologie et la philosophie du langage, qui laissent apparaître les enjeux philosophiques de l'oeuvre de W. V. A. Quine. Ces neuf essais témoignent de l'articulation du logique et du philosophique et mettent en évidence la créativité de la logique, définie en conclusion du dernier essai.

Purpose We explored the views of Botswana stakeholders involved in developing, implementing and applying ethical standards for return of individual study results from genomic research. This allowed for mapping opportunities and challenges regarding actionability requirements that determine whether individual genomic research results should be fed back. Methods Using in-depth interviews, this study explored the views of sixteen (16) stakeholders about the extent, nature and timing of feedback of individual genomic research findings, including incidental findings that arise in the context of (...) African genomics research. Coded data was analyzed through an iterative process of analytic induction to document and interpret themes. Results Overall, respondents were of the view that feedback of actionable individual genomic results was an important outcome that could benefit participants. However, a number of themes surfaced that pointed to opportunities and challenges that exist in Botswana that could help in planning for feeding back of individual genomic results that were mapped. Some of the opportunities cited by the respondents included the existence of good governance; democracy and humanitarianism; universal healthcare system; national commitment to science; research and innovation to transform Botswana into a knowledge-based economy; and applicable standard of care which could promote actionability. On the other hand, contextual issues like the requirement for validation of genomic research results in accredited laboratories, high cost of validation of genomic results, and linkage to care, as well as lack of experts like genomic scientists and counselors were considered as challenges for return of individual results. Conclusion We propose that decisions whether and which genomic results to return take into consideration contextual opportunities and challenges for actionability for return of results in a research setting. This is likely to avoid or minimize ethical issues of justice, equity and harm regarding actionability decisions. (shrink)

L'oeuvre de Pierre Bourdieu a exercé une influence profonde sur la recherche scientifique, bien au-delà de la sociologie. Du fait de sa formation de philosophe, de ses incursions en anthropologie et en linguistique, de son souci constant d'analyser la dimension historique des faits sociaux, de son regard critique sur la science politique et le droit, de ses emprunts au vocabulaire économique, ainsi que de son intérêt marqué pour l'art et la littérature, Bourdieu n'a cessé de dialoguer mais aussi parfois de (...) "ferrailler" avec différentes disciplines des sciences sociales. Cet ouvrage collectif rend compte de manière inédite de l'étendue des réceptions et appropriations des travaux de Pierre Bourdieu dans les diverses sciences sociales. Il propose un éclairage original sur les usages du travail de Bourdieu en sociologie, anthropologie, histoire, philosophie, science politique, économie, droit, études littéraires et sciences de l'information et de la communication. Il permet ainsi d'entrer dans le laboratoire des sciences sociales qui font usage de Bourdieu et donne à voir la manière dont ses concepts et ses méthodes peuvent être déplacés et employés au-delà de l'univers disciplinaire dans lequel ils ont été forgés ; les luttes autour des frontières disciplinaires ; les obstacles à la réception de Bourdieu ou au contraire les conditions qui la favorisent. Fenêtre ouverte sur le renouvellement des études bourdieusiennes, I'ouvrage fait également dialoguer plusieurs générations de chercheurs, au-delà du premier cercle des "héritiers". Il permet ainsi de mieux connaître ou de découvrir des recherches contemporaines qui, dans le sillage de celles de Pierre Bourdieu, contribuent à la construction d'une connaissance décloisonnée, réflexive et critique du monde social. (shrink)

Key to discussions around feedback of individual results from genomics research are practical questions on how such results should be fed back, by who and when. However, there has been virtually no work investigating these practical considerations for feedback of individual genetic results in the context of low-and middle-income countries (LMICs), especially in Africa. Consequently, we conducted deliberative focus group discussions with 6 groups of adolescents (n = 44) who previously participated in a genomics study in Botswana as well as (...) 6 groups of parents and caregivers (n = 49) of children who participated in the same study. We also conducted in-depth interviews with 6 adolescents and 6 parents or caregivers. Our findings revealed that both adolescents and parents would prefer to receive their individual genetic results in person, with adolescents preferring researchers to provide feedback, while parents preferred doctors who are associated with the study. Both adolescents and parents further expressed that feedback should be supported by counselling but differed on the timing of feedback, with preferences ranging from feedback as quickly as possible to feedback at project end. In conclusion, decisions on practicalities for feedback of results should be done in account of participants’ context and considerations of participants’ preferences. (shrink)

There are concerns that participation in open science will lead to various forms of exploitation – of researchers and scholars in low-income countries and under-resourced institutions. This article defends a contrary thesis and demonstrates the exact ways the underexplored notions of communal relationships, human dignity and social justice – and the normative principles to which they give rise – grounded in African philosophy can usefully address critical concerns regarding exploitation in the sharing of research resources to facilitate open partnership/collaboration and (...) reuse. Further research is required to study the specific roles different institutions can play in facilitating open practice and contribute towards establishing effective structures that can enhance equity and balance unfavourable power asymmetries. (shrink)

There are concerns that participation in open science will lead to various forms of exploitation – of researchers and scholars in low-income countries and under-resourced institutions. This article defends a contrary thesis and demonstrates the exact ways the underexplored notions of communal relationships, human dignity and social justice – and the normative principles to which they give rise – grounded in African philosophy can usefully address critical concerns regarding exploitation in the sharing of research resources to facilitate open partnership/collaboration and (...) reuse. Further research is required to study the specific roles different institutions can play in facilitating open practice and contribute towards establishing effective structures that can enhance equity and balance unfavourable power asymmetries. (shrink)

There are concerns that participation in open science will lead to various forms of exploitation – of researchers and scholars in low‐income countries and under‐resourced institutions. This article defends a contrary thesis and demonstrates the exact ways the underexplored notions of communal relationships, human dignity and social justice – and the normative principles to which they give rise – grounded in African philosophy can usefully address critical concerns regarding exploitation in the sharing of research resources to facilitate open partnership/collaboration and (...) reuse. Further research is required to study the specific roles different institutions can play in facilitating open practice and contribute towards establishing effective structures that can enhance equity and balance unfavourable power asymmetries. (shrink)

The article argues the thesis that institutions have a prima facie obligation to fund the feedback of individual findings in genomic research conducted on the African continent by drawing arguments from an underexplored Afro-communitarian view of distributive justice and rights of researchers to be aided. Whilst some studies have explored how institutions have a duty to support return as a form of ancillary care or additional foreseeable service in research by mostly appealing to dominant principles and theories in the Global (...) North, this mostly normative study explores this question by appealing to underexplored African philosophy. This is a new way of thinking about institutional responsibility to fund feedback and responds to the call to decolonise health research in Africa. Further studies are required to study how this prima facie obligation will interact with social contexts and an institution’s extant relationships to find an actual duty. The research community should also work out procedures, policies and governance structures to facilitate feedback. In our opinion, though the impacts of feeding back can inform how institutions think about their actual duty, these do not obliterate the binding duty to fund feedback. (shrink)

La premiere partie exposera la conception ambrosienne de la nature en general, puis de la nature humaine plus specialement. Depuis plusieurs annees, pas mal d'etudes ont ete faites sur l'anthropologie chez plusieurs Peres de l'Eglise. Peu a peu s'est dessinee une reponse a cette question: comment les Peres voient-ils l'homme? Quelle est, pour eux, sa nature, son essence? Ces etudes ont beaucoup d'importance pour tous ceux qui veulent aborder le probleme de la loi naturelle chez les Peres. La seconde partie (...) etudiera d'une maniere approfondie la loi naturelle selon l'eveque de Milan. Puisque le concept nature est polyvalent, il est clair que celui de loi naturelle le sera aussi. En traitant de la nature dans la premiere partie et de la loi naturelle dans la seconde, nous faisons une distinction explicite entre les considerations philosophiques et la conception theologique que saint Ambroise a developpees. (shrink)

Ce livre est l’un des premiers en français à avoir été consacré aux émotions en histoire contemporaine en tentant de définir un « régime émotionnel » spécifique à la période et à une grande partie de l’élite d’un État (Reddy, p. 43). Les études s’appuient sur une généalogie qui remonte, sous le vocable des « sensibilités », en 1941 pour Lucien Febvre, puis à Alain Corbin. Nous nous intéresserons particulièrement dans ce livre collectif aux contributions qui concernent « le genre (...) des émotions... (shrink)

À quelques exceptions près (dont la thèse de sociologie soutenue en 2012 par Guillaume Brie, à l’Université Paris Ouest Nanterre La Défense, Traitement social de la criminalité sexuelle pédophile. Rapports de pouvoir et lutte des représentations entre agents chargés du contrôle et condamnés), rares sont les auteur.e.s en sciences sociales à avoir interrogé les violences sexuelles sur mineurs. L’intensité des émotions qu’elles suscitent aujourd’hui rend tout propos distancié difficilement audi...