This introduction to the special issue on data and agency argues that datafication should not only be understood as the process of collecting and analysing data about Internet users, but also as feeding such data back to users, enabling them to orient themselves in the world. It is important that debates about data power recognise that data is also generated, collected and analysed by alternative actors, enhancing rather than undermining the agency of the public. Developing this argument, we first make (...) clear why and how the question of agency should be central to our engagement with data. Subsequently, we discuss how this question has been operationalized in the five contributions to this special issue, which empirically open up the study of alternative forms of datafication. Building on these contributions, we conclude that as data acquire new power, it is vital to explore the space for citizen agency in relation to data structures and to examine the practices of data work, as well as the people involved in these practices. (shrink)

This article investigates the claims and complexities involved in the platform-based economics of health and fitness apps. We examine a double-edged logic inscribed in these platforms, promising to offer personal solutions to medical problems while also contributing to the public good. On the one hand, online platforms serve as personalized data-driven services to their customers. On the other hand, they allegedly serve public interests, such as medical research or health education. In doing so, many apps employ a diffuse discourse, hinging (...) on terms like “sharing,” “open,” and “reuse” when they talk about data extraction and distribution. The analytical approach we adopt in this article is situated at the nexus of science and technology studies, political economy, and the sociology of health and illness. The analysis concentrates on two aspects: datafication and commodification. We apply these analytical categories to three specific platforms: 23andMe, PatientsLikeMe, and Parkinson mPower. The last section will connect these individual examples to the wider implications of health apps’ data flows, governance policies, and business models. Regulatory bodies commonly focus on the safety and security of apps, but pay scarce attention to health apps’ techno-economic governance. Who owns user-generated health data and who gets to benefit? We argue that it is important to reflect on the societal implications of health data markets. Governments have the duty to provide conceptual clarity in the grand narrative of transforming health care and health research. (shrink)

ArgumentSociologists and historians of science, such as Richard Whitley and Stephen Hilgartner, identified a culturally dominant discourse of science popularization in the broader society. In this dominant view, a clear distinction is maintained between scientific knowledge and popularized knowledge. Popularization of science is seen as the process of transmitting real science to a lay public. This discourse on science popularization was criticized by Whitley and Hilgartner as an inadequate simplification. Yet, the battered traditional model of popularization remains remarkably resistant to (...) these theoretical attacks. In this paper I will argue, based on research of the output of the Belgian economist Gustave de Molinari, and more specifically, his opinion on the role of government in economic life, that the boundary between science and popularization in political economy is not clear and that the status of scientists fluctuates over time and in different contexts. It is therefore impossible for historians or economists to distinguish science from popularization based on the essential characteristics or intrinsic quality of the work. De Molinari's ideas are followed through the different media of science and journalism. Although de Molinari himself differentiated between his scientific and “popular” work, the boundary between science and popularization proves to be highly permeable, in both directions. (shrink)

Background The European Union aims to optimize patient protection and efficiency of health-care research by harmonizing procedures across Member States. Nonetheless, further improvements are required to increase multicenter research efficiency. We investigated IRB procedures in a large prospective European multicenter study on traumatic brain injury, aiming to inform and stimulate initiatives to improve efficiency. Methods We reviewed relevant documents regarding IRB submission and IRB approval from European neurotrauma centers participating in the Collaborative European NeuroTrauma Effectiveness Research in Traumatic Brain Injury. (...) Documents included detailed information on IRB procedures and the duration from IRB submission until approval. They were translated and analyzed to determine the level of harmonization of IRB procedures within Europe. Results From 18 countries, 66 centers provided the requested documents. The primary IRB review was conducted centrally or locally and primary IRB approval was obtained after one, two or three review rounds with a median duration of respectively 50 and 98 days until primary IRB approval. Additional IRB approval was required in 55% of countries and could increase duration to 535 days. Total duration from submission until required IRB approval was obtained was 114 days and appeared to be shorter after submission to local IRBs compared to central IRBs. Conclusion We found variation in IRB procedures between and within European countries. There were differences in submission and approval requirements, number of review rounds and total duration. Research collaborations could benefit from the implementation of more uniform legislation and regulation while acknowledging local cultural habits and moral values between countries. (shrink)

An important challenge when creating automatically processable laws concerns open-textured terms. The ability to measure open-texture can assist in determining the feasibility of encoding regulation and where additional legal information is required to properly assess a legal issue or dispute. In this article, we propose a novel conceptualisation of open-texture with the aim of determining the extent of open-textured terms in legal documents. We conceptualise open-texture as a lever whose state is impacted by three types of forces: internal forces (the (...) words within the text themselves), external forces (the resources brought to challenge the definition of words), and lateral forces (the merit of such challenges). We tested part of this conceptualisation with 26 participants by investigating agreement in paired annotators. Five key findings emerged. First, agreement on which words are open-texture within a legal text is possible and statistically significant. Second, agreement is even high at an average inter-rater reliability of 0.7 (Cohen’s kappa). Third, when there is agreement on the words, agreement on the Open-Texture Value is high. Fourth, there is a dependence between the Open-Texture Value and reasons invoked behind open-texture. Fifth, involving only four annotators can yield similar results compared to involving twenty more when it comes to only flagging clauses containing open-texture. We conclude the article by discussing limitations of our experiment and which remaining questions in real life cases are still outstanding. (shrink)

Immunological mechanisms and therapy approaches in psychotic syndromes were recently supported by the discovery of autoantibody-associated limbic and non-limbic encephalitis. However, how clinical diagnostic procedures in psychiatry should be adapted to these new insights is still unclear. In this study, we analyzed the cerebrospinal fluid (CSF) and neuroimmunological alterations and their association with cerebral MRI (cMRI) and electroencephalographic (EEG) findings. From 2006 until 2013, we acquired 180 CSF samples from psychotic patients. Between 2006 and 2009, CSF examinations were only performed (...) in cases in which organic brain disease was suspected. Since then, this procedure has been integrated into our routine diagnostic workup. CSF basic diagnostics were supplemented by measuring antineuronal antibodies against intracellular synaptic antigens, antibodies against intracellular onconeural antigens, antibodies against neuronal cell surface antigens and thyroid antibodies. In addition, cMRIs and EEGs were conducted. We found white cell counts elevated in 3.4% of the cases, albumin quotient elevated in 21.8%, and protein concentration elevated in 42.2%. Evidence of intrathecal immunoglobulin synthesis was found in 7.2% of the cases. Antibodies measured against neuronal cell surface antigens were positive in 3.2%. Reactivity on antibodies against intracellular onconeural antigens were detected in 3.5%. Serum thyroid antibodies were elevated in 24.7%. Abnormalities were found in 39.5% of cMRIs and in 34.3% of EEGs. The main finding of our study was the high prevalence of CSF and autoantibody abnormalities in 54.4% of psychotic patients. In combination with cMRIs and EEGs, 75.6% showed abnormal findings. Our results are discussed with regard to the concept of immunological encephalopathy. Future studies should analyze the efficacy of immunomodulatory therapies. (shrink)

High-quality doctor-patient communication in end-of-life care results in better quality of life for patients. In linguistically and culturally diverse societies, language discordant consultations become daily practice, leading to difficulties in eliciting patient preferences toward end-of-life care. Although family members invariably act as informal interpreters, this may cause some ethical dilemmas. We present a case of a palliative patient whose son acted as an interpreter. This case generated a triple- layered ethical dilemma: how to safeguard patient autonomy against paternalistic interventions by (...) family members, how to respect the relational context in which patient autonomy can be realized, and how to respect the ethno-cultural values of the patient and his family. These issues are being discussed and reflected upon within the framework shared decision making involving informal- and professional interpreters. The complementary use of professional interpreters next to family members acting as informal interpreters is recommended. (shrink)

During the course of evolution, variations of a protein sequence is an ongoing phenomenon however limited by the need to maintain its structural and functional integrity. Deciphering the evolutionary path of a protein is thus of fundamental interest. With the development of new methods to visualize high dimension spaces and the improvement of phylogenetic analysis tools, it is possible to study the evolutionary trajectories of proteins in the sequence space. Using the data-driven high-dimensional scaling method, we show that it is (...) possible to predict and represent potential evolutionary trajectories by representing phylogenetic trees into a 3D projection of the sequence space. With the case of the aminodeoxychorismate synthase, an enzyme involved in folate synthesis, we show that this representation raises interesting questions about the complexity of the evolution of a given biological function, in particular concerning its capacity to explore the sequence space. (shrink)

The main purpose of this paper is to account for the varying analysis and formalisations of a same advertisement text, “Mir Rose”, by Jean Michel Adam. First, we draw the methodological frame of this psycholinguistic approach of composing and understanding-memorizing texts. We refer to the notions of prototypical textual schema, semantic macrostructure and superstructure. Then we point out the differences between argumentative text and argumentative discourse. Last, we try to explain why it has been possible for Adam to analyse and (...) formalise the same text first as a narrative one and a few years later as an argumentative one. We suggest that his narrative approach is not specific and textual “narrative” means here “temporal-causative sequence” or “problem solving”, i.e., deeper and more general psychological devices than those involved in processing narrative text per se. From Toulmin and van Dijk approaches of argumentation, we propose our own analysis and formalisation of “Mir Rose”, the psychological validity or plausibility of which should be tested in experimental tasks of reading-memorising. (shrink)

While the mainstream media continues to narrowly define justice and reduce the site of its presence or absence to murder scenes and court cases, justice is often foreclosed long before someone is murdered and we must #SayHerName. To expand the project of Black mattering beyond race and physical death, this essay animates how body policing through school dress code policy sanctions racial-sexual violence and provide girls with an ultimatum: either abandon body sovereignty and self-expression, or accept the consequences of being (...) read as a distraction, a problem. membering classic Black feminist theory and the 2013 case of Vanessa Van Dyke, this essay locates these underrecognized facets of state violence as an extension of the #SayHerName project. Through a Black girlhood studies framework, the author underscores embodiment as an essential measure of justice and reframes mattering through the importance of Black girls’ crowns. (shrink)

We prove that, for each countable ordinal ξ≥1, there exist some -complete ω-powers, and some -complete ω-powers, extending previous works on the topological complexity of ω-powers [O. Finkel, Topological properties of omega context free languages, Theoretical Computer Science 262 669–697; O. Finkel, Borel hierarchy and omega context free languages, Theoretical Computer Science 290 1385–1405; O. Finkel, An omega-power of a finitary language which is a borel set of infinite rank, Fundamenta informaticae 62 333–342; D. Lecomte, Sur les ensembles de phrases (...) infinies constructibles a partir d’un dictionnaire sur un alphabet fini, Séminaire d’Initiation a l’Analyse, 1, année 2001–2002; D. Lecomte, Omega-powers and descriptive set theory, Journal of Symbolic Logic 70 1210–1232; J. Duparc, O. Finkel, An ω-Power of a Context-Free Language Which Is Borel Above , in: S. Bold, B. Löwe, T. Räsch, J. van Benthem , in the Proceedings of the international conference foundations of the formal sciences V : Infinite Games, November 26th to 29th, 2004, Bonn, Germany, in: Studies in Logic, vol. 11, College Publications at King’s College, 2007, pp. 109–122]. We prove effective versions of these results; in particular, for each recursive ordinal there exist some recursive sets A2<ω such that , where and denote classes of the hyperarithmetical hierarchy. To do this, we prove effective versions of a result by Kuratowski, describing a set as the range of a closed subset of the Baire space ωω by a continuous bijection. This leads us to prove closure properties for the pointclasses in arbitrary recursively presented Polish spaces. We apply our existence results to get better computations of the topological complexity of some sets of dictionaries considered in [D. Lecomte, Omega-powers and descriptive set theory, Journal of Symbolic Logic 70 1210–1232]. (shrink)

“Tu es de mon sang”: Les alliances dans le Proche-Orient ancien. By Dominique Charpin. Paris: collège de France, les Belles leTTres, 2019. Pp. 337, illus. €21.

This study shows how three Chilean media construct in their discourse the social actor ‘secondary students’, in a multimodal way. It focuses on the representation of Televisión Nacional de Chile (also known as TVN), El Dínamo and El Ciudadano of this social group which is often suppressed suppressed from the media sphere. It is a qualitative study with a social semiotic approach, following the guidelines of Visual Grammar and the typology of representation of social actors by van Leeuwen (2003). The (...) corpus comprised 15 multimodal texts of 2018 compiled from internet sites, which constitute a semiotic chain of a news event about education. The results suggest that TVN creates the meaning of an ‘aggressor student’, El Dínamo as a ‘student to be reformed’; whereas El Ciudadano, represents him as a social actor who is an ‘active participant’. (shrink)

« Puissance + Praxis » aborde le principe d’organisation de l’exposition du projet Interlaced, qui rend hommage à la vie et à l’œuvre de Dominique Malaquais : l’accent est mis sur les artistes dont la pratique aborde le pouvoir de diverses manières. L’article positionne le motif derrière une telle pratique, qui peut être transgressive ou encourager la résistance, comme étant finalement une préoccupation pour la condition humaine. L’essai considère également le contexte – le temps et l’espace – qui encadre (...) la pratique curatoriale, en particulier en ce qui concerne l’Afrique. (shrink)

In this essay, I will argue that a political theology of human work can provide the sacramental principle underlying the theology of labor. This principle could complement the foundations of Catholic social teaching, since the sacramental aspects of work have not been made very explicit in the ethical framework of the Church's theology of work. The view of labor as the active participation in God's future is an important aspect of such a theology. In order to serve as a foundation (...) for faith-based labor organizing, I will claim that it needs to be complemented by a sacramental view of labor as art, a labor-aesthetic that undergirds a labor-ethic, in which labor itself becomes a sign and instrument of the way the Church becomes God's work in the world. First, I will sketch an outline of some of the major positions on labor in modern Catholic theology. Then, I will draw on the writings of the British poet and painter David Jones to explore a sacramental view of human work, arguing that a sacramental view of work could support the Church's social criticism of laborer's circumstances. (shrink)

Beginning with a brief discussion of Dominique Janicaud’s proposal for a minimalist phenomenology, I turn to the work G. van der Leeuw and argue that his work in the phenomenology of religion can be profitably read as a minimalist phenomenology. I do this by focusing mainly on his methodological remarks, but do occasionally refer to his analyses of particular religious phenomena. Finally, the paper closes with some suggestions about how to think of the relationship between minimalist phenomenology and religious (...) belief. (shrink)

In 2011, van Dijck and Fias described a positional SNARC effect: the SPoARC. To-be-remembered items presented centrally on a screen seemed to acquire a left-to-right spatial dimension. If confirmed, this spatialization could be crucial for immediate memory theories. However, given the intricate links between visual and spatial dimensions, this effect could be due to the visual presentation, which could have probed the left-to-right direction of reading/writing. To allow a generalization of this effect, we adapted van Dijck and Fias's (...) task using an auditory version of Sternberg's paradigm. Lists of five consonants were auditorily presented at a rate of 3 s/item. A SPoARC effect was observed. The consequences are discussed first from an immediate memory perspective, putting forward the view that order could be coded through spatialization, and then in terms of similarities between SPoARC and SNARC. (shrink)

In Cameroon, a monumental "statue of liberty" is made from scrap metal. In Congo, a thriving popular music incorporates piercing screams and carnal dances. When these and other instantiations of the aesthetics of Africa and its diasporas are taken into account, how are ideas of beauty reconfigured? Scholars and artists take up that question in this invigorating, lavishly illustrated collection, which includes more than one hundred color images. Exploring sculpture, music, fiction, food, photography, fashion, and urban design, the contributors engage (...) with and depart from canonical aesthetic theories as they demonstrate that beauty cannot be understood apart from ugliness. Highlighting how ideas of beauty are manifest and how they mutate, travel, and combine across time and distance, continental and diasporic writers examine the work of a Senegalese sculptor inspired by Leni Riefenstahl's photographs of Nuba warriors; a rich Afro-Brazilian aesthetic incorporating aspects of African, Jamaican, and American cultures; and African Americans' Africanization of the Santería movement in the United States. They consider the fraught, intricate spaces of the urban landscape in postcolonial South Africa; the intense pleasures of eating on Réunion; and the shockingly graphic images on painted plywood boards advertising "morality" plays along the streets of Ghana. And they analyze the increasingly ritualized wedding feasts in Cameroon as well as the limits of an explicitly "African" aesthetics. Two short stories by the Mozambican writer Mia Couto gesture toward what beauty might be in the context of political failure and postcolonial disillusionment. Together the essays suggest that beauty is in some sense future-oriented and that taking beauty in Africa and its diasporas seriously is a way of rekindling hope. Contributors. Rita Barnard, Kamari Maxine Clarke, Mia Couto, Mark Gevisser, Simon Gikandi, Michelle Gilbert, Isabel Hofmeyr, William Kentridge, Dominique Malaquais, Achille Mbembe, Cheryl-Ann Michael, Celestin Monga, Sarah Nuttall, Patricia Pinho, Rodney Place, Els van der Plas, Pippa Stein, Françoise Vergès. (shrink)

In Cameroon, a monumental “statue of liberty” is made from scrap metal. In Congo, a thriving popular music incorporates piercing screams and carnal dances. When these and other instantiations of the aesthetics of Africa and its diasporas are taken into account, how are ideas of beauty reconfigured? Scholars and artists take up that question in this invigorating, lavishly illustrated collection, which includes more than one hundred color images. Exploring sculpture, music, fiction, food, photography, fashion, and urban design, the contributors engage (...) with and depart from canonical aesthetic theories as they demonstrate that beauty cannot be understood apart from ugliness. Highlighting how ideas of beauty are manifest and how they mutate, travel, and combine across time and distance, continental and diasporic writers examine the work of a Senegalese sculptor inspired by Leni Riefenstahl’s photographs of Nuba warriors; a rich Afro-Brazilian aesthetic incorporating aspects of African, Jamaican, and American cultures; and African Americans’ Africanization of the Santería movement in the United States. They consider the fraught, intricate spaces of the urban landscape in postcolonial South Africa; the intense pleasures of eating on Réunion; and the shockingly graphic images on painted plywood boards advertising “morality” plays along the streets of Ghana. And they analyze the increasingly ritualized wedding feasts in Cameroon as well as the limits of an explicitly “African” aesthetics. Two short stories by the Mozambican writer Mia Couto gesture toward what beauty might be in the context of political failure and postcolonial disillusionment. Together the essays suggest that beauty is in some sense future-oriented and that taking beauty in Africa and its diasporas seriously is a way of rekindling hope. Contributors. Rita Barnard, Kamari Maxine Clarke, Mia Couto, Mark Gevisser, Simon Gikandi, Michelle Gilbert, Isabel Hofmeyr, William Kentridge, Dominique Malaquais, Achille Mbembe, Cheryl-Ann Michael, Celestin Monga, Sarah Nuttall, Patricia Pinho, Rodney Place, Els van der Plas, Pippa Stein, Françoise Vergès. (shrink)