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Purpose: The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. Methods: We analyzed the “Your DNA, Your Say” online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gathered in 15 languages. We analyzed how participants responded when asked whether return of results (RoR) would motivate their decision to donate DNA or health data. We examined variation across the study countries and compared the responses of participants from other countries with those from the United States, which has been the subject of the majority of research on return of genomic results to date. Results: There was substantial variation in the extent to which respondents reported being influenced by RoR. However, only respondents from Russia were more influenced than those from the United States, and respondents from 20 countries had lower odds of being partially or wholly influenced than those from the United States. Conclusion: There is substantial international variation in the extent to which the RoR may motivate people’s intent to donate DNA or health data. The United States may not be a clear indicator of global attitudes. Participants’ preferences for return of genomic results globally should be considered. This work was supported by Wellcome grant 206194 to Society and Ethics Research, Wellcome Connecting Science, Wellcome Genome Campus.

Background Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate this. Methods We analyse the ‘Your DNA, Your Say’ online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle- and high-income countries, gathered in 15 languages. We examine how participants perceived the relative value of measures to demonstrate the trustworthiness of those using donated DNA and/or medical information. We examine between-country variation and present a consolidated ranking of measures. Results Providing transparent information about who will benefit from data access was the most important measure to increase trust, endorsed by more than 50% of participants across 20 of 22 countries. It was followed by the option to withdraw data and transparency about who is using data and why. Variation was found for the importance of measures, notably information about sanctions for misuse of data—endorsed by 5% in India but almost 60% in Japan. A clustering analysis suggests alignment between some countries in the assessment of specific measures, such as the UK and Canada, Spain and Mexico and Portugal and Brazil. China and Russia are less closely aligned with other countries in terms of the value of the measures presented. Conclusions Our findings highlight the importance of transparency about data use and about the goals and potential benefits associated with data sharing, including to whom such benefits accrue. They show that members of the public value knowing what benefits accrue from the use of data. The study highlights the importance of locally sensitive measures to increase trust as genomic data sharing continues globally.

Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one’s DNA and health data for research is relatively low, and trust in the process of data’s being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our “Your DNA, Your Say” study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one’s DNA and health data for research is relatively low, and trust in the process of data’s being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our “Your DNA, Your Say” study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.

Ebola virus disease (EVD) went in the space of a few months from being a forgotten tropical disease to a global "health emergency". The scope of this Ebola virus epidemic (Zaire strain), which has broken out in West Africa, its spread and the high number of deaths reported among frontline health workers are unprecedented. This article describes how a specialist hospital deals with imported cases of EVD.

Ebola virus disease (EVD) went in the space of a few months from being a forgotten tropical disease to a global "health emergency". The scope of this Ebola virus epidemic (Zaire strain), which has broken out in West Africa, its spread and the high number of deaths reported among frontline health workers are unprecedented. This article describes how a specialist hospital deals with imported cases of EVD.

Aunque cuestionada desde los años 80, la noción de "lengua materna" sigue siendo ampliamente utilizada en los estudios de didáctica de las lenguas sobre la lectura en lengua extranjera. A menudo, "la lengua materna" es considerada como el único idioma de aprendizaje de la lectura, en el que se lee más y mejor, y que se prefiere a todos los demás. Este artículo confronta estas presuposiciones con las prácticas de lectura de libros de 24 adultos plurilingües que viven en Europa occidental. De ello se desprende que, por razones históricas, políticas y sociales en contextos dados, o por trayectorias individuales (educativas, geográficas y afectivas), todos los individuos no fueron, o no únicamente, escolarizados en su lengua familiar. Además, aprender a leer en un idioma no garantiza que seguirá siendo el idioma principal o preferido de lectura a lo largo de toda la vida., Bien que remise en question depuis les années 1980, la notion de "langue maternelle" reste très utilisée dans les études de didactique des langues portant sur la lecture en langue étrangère. Souvent considérée comme la seule langue dans laquelle on a appris à lire, "la langue maternelle" serait celle qu'on lit le plus et le mieux, qu'on préfère à toutes les autres. Cet article confronte ces présupposés aux pratiques de lecture de livres de 24 adultes plurilingues vivant en Europe de l'Ouest. Il en ressort que, pour des raisons historiques, politiques et sociales dans un contexte donné, ou à cause de parcours scolaires, géographiques et affectifs individuels, des personnes n'ont pas été exclusivement - voire pas du tout - scolarisées dans leurs langues familiales. Par ailleurs, avoir appris à lire dans une langue ne garantit pas qu'elle restera la principale langue, ni la langue préférée de lecture tout au long de la vie.

Pour citer cet ouvrage : Gao J., Guérin M., Allegranzi V., Rivière M., Sauwala L., Simon C., Viain M. & Xue L. (éds.). 2014. Actes des 16èmes Rencontres Jeunes Chercheurs en Sciences du Langage : Modèles et modélisation dans les sciences du langage. http://hal.archives-ouvertes.fr/RJC2013; International audience; How do we grasp the variety of reality without trying to establish a structure and formulate rules supposed to explain or describe the way it works? How do we understand a phenomenon without first trying to conceive its possible operations? Even if the use of an abstract framing is not always enough for comprehending a given linguistic phenomenon, psychological process or cognitive strategy, the construction and utilisation of models often appears necessary - just as it is necessary to question and revise existing models, in order to apprehend ever more finely grained phenomena. Because of the varied disciplines grouped under the heading "language sciences", the very word "model" is to be understood in different senses. For instance, the psycholinguist proposing a model to account for the psycho-cognitive process of the reader does not conceive the model in the same way as the semiotician speaking about the "model reader" (Eco, 1979). In the same way syntactic models have different functions in natural language processing and in descriptive linguistics. The many approaches of the varied disciplines lead to question regarding not only the notion of "model" but also the activity of modeling linguistic data, depending on descriptive, explanatory or predictive purposes. Thus, the various definitions of "model" are of interest, together with their application, their transdisciplinary potentialities and their possible transformations. The questions of the relevance and limits of these models are also of interest, as is the issue of the very notion of "model". According to the different approaches adopted by researchers, the model can be considered as a necessity, or an obstacle, as a sign of rigor or as a scientific bias. Is it a theoretical restraint into the empirical data must fit in with? Or is it an abstract construction required to understand the dynamics and functioning of a any given phenomenon or linguistic fact?; Comment appréhender la diversité du réel sans chercher à la structurer et à formuler des règles supposées expliquer ou du moins décrire son fonctionnement ? Comment comprendre un phénomène sans d'abord en concevoir des fonctionnements possibles ? Même si le recours à une réalité idéale ne suffit pas toujours à la compréhension d'un phénomène langagier, d'un fonctionnement psychologique ou encore d'une stratégie cognitive, la construction et l'exploitation de modèles apparaît souvent nécessaire. Tout comme apparaît nécessaire la remise en cause et la révision de ces représentations, afin d'appréhender des réalités plus nuancés. La diversité des disciplines regroupées sous l'intitulé "sciences du langage" encourage à envisager le terme de "modèle" dans des acceptions bien différentes. Par exemple, un psycholinguiste proposant un modèle pour rendre compte de la réalité cognitivo-psychologique du lecteur ne voit pas la notion de modèle de la même manière qu'un sémioticien quand il parle de "lecteur modèle" (Eco, 1985). De même, les modèles syntaxiques n'ont pas la même fonction en traitement automatique des langues qu'en linguistique descriptive. La multiplicité des approches adoptées par les différentes disciplines engage à interroger non seulement la notion de modèle, mais aussi la modélisation des données langagières, que ce soit à des fins descriptives, explicatives ou prédictives. On peut donc s'intéresser aux différentes définitions du modèle, et se pencher sur leur mise en pratique, leur potentiel transdisciplinaire et leurs éventuelles transformations. On peut aussi s'interroger sur la pertinence et les limites de ces modèles, voire de la notion même de modèle. Selon les approches des chercheur-e-s, le modèle peut ainsi être perçu comme une nécessité ou comme un obstacle, comme un indice de rigueur ou comme un biais scientifique. S'agit-il d'un carcan théorique auquel les données empiriques doivent s'ajuster ? Ou s'agit-il d'une construction sans laquelle la dynamique et le fonctionnement d'une réalité seraient impossible à appréhender ?

Ce rapport présente la version actualisée de la partie « Atlantique » du référentiel national des habitats marins benthiques en expliquant les modifications opérées. La mise à jour de la partie marine du référentiel européen EUNIS ainsi que les échanges avec les benthologues ont conduit à revoir les principes généraux de la typologie. La structure hiérarchique a été modifiée en débutant au premier niveau par des combinaisons de l’étagement et des types de substrat et ce, de manière à être le plus proche possible de la nouvelle version d’EUNIS. A la suite de ce premier niveau, révisé intégralement, les habitats listés dans la précédente version de la typologie ont été replacés au sein de la combinaison étage / substrat pertinente. Un effort particulier a été réalisé pour définir et homogénéiser la terminologie utilisée. La typologie a été complétée par de nouveaux habitats émanant de la bibliographie et de propositions directes d’experts. Enfin, les points nécessitant l’acquisition de nouvelles connaissances scientifiques sont également mentionnés.