Towards a data sharing Code of Conduct for international genomic research

Data sharing is increasingly regarded as an ethical and scientific imperative that advances knowledge and thereby respects the contributions of the participants. Because of this and the ever-increasing amount of data access requests currently filed around the world, three groups have decided to develop data sharing principles specific to the context of collaborative international genomics research. These groups are: the international Public Population Project in Genomics (P3G), an international consortium of projects partaking in large-scale genetic epidemiological studies and biobanks; the European Network for Genetic and Genomic Epidemiology (ENGAGE), a research project aiming to translate data from large-scale epidemiological research initiatives into relevant clinical information; and the Centre for Health, Law and Emerging Technologies (HeLEX). We propose seven different principles and a preliminary international data sharing Code of Conduct for ongoing discussion

Biobanks in Europe: Prospects for Harmonisation and Networking

Biobanks (i.e. the organised collections consisting of biological samples and associated data, have gained great significance for research and personalised medicine) are increasingly recognised as a crucial infrastructure for research. However, at the same time the widely varied practices in biobanking regarding for example collection, storage and consent procedures may also pose a barrier to cross-border research and collaboration by limiting access to samples and data. In this context, a recent study indicates that the limited sharing and linkage of samples is a key barrier for research, such as pharmacogenetics. Wide variation is observed in the implementation of relevant existing regulation, which may add further burden to harnessing the public health benefit of these collections. Therefore, it has been suggested that there is a strong need for a harmonised approach on biobanking practices and improved networking of existing and new collections. This Report shows information on the extent of biobanking in Europe, collected through a survey of existing European biobanks regarding both technical aspects (e.g. storage conditions) and aspects of governance and ethics (e.g. sample and data sharing, consent procedures, collaborations etc.). In total, 126 biobanks from 23 countries in Europe were surveyed. Significant lack of harmonisation has been found, especially in the legal aspects (e.g. data protection, consent). This may be partly attributed to the varied interpretation and implementation of EC directives covering aspects of biobanking by national authorities. One of the main complications is that, although the field of data protection is harmonised through the EC directive on data protection, the collection, storage, and sharing of samples is not. Furthermore, in countries that have introduced special biobanks acts it is not always clear where the borderline lies between the scope of these acts and that of the Directive. Indeed, according to the survey, biobanks within the same country reported different practices, suggesting that the problems of harmonization might be higher than expected and claimed. Not only are there different national laws, but apparently within EU member states biobanks do not implement homogenous practices on privacy and data protection issues. Desk research and expert interviews were done to complete the picture presented by the survey. Experts widely recognised the need to improve collaboration and networking among the numerous existing biobanks, as well as new initiatives in Europe (and world-wide). Efficient organisation of these resources through the development, for example, of an infrastructure would potentially facilitate financial sustainability and greatly contribute to the rapid progress of research and development of better diagnostic and therapeutic approaches. The most favoured model involved the development of a virtual biobank that would allow networking of biobanks across different countries and centralisation of data rather than samples. However, several organisational challenges (wide variation in biospecimen collection, storage techniques, data comparability, etc.) may hamper such an effort. The lack of uniform regulatory and ethical requirements and/or practices may pose an additional barrier. The European Commission has already recognised the importance of international biobank projects and many of them have been funded and established in the context of the EU Framework Programmes. To help promote networking of biobanks and thus maximise public health benefits, at least some degree of harmonisation must be achieved. Whether this should be achieved solely at the level of legal/regulatory requirements and practices and/or by technical standardisation requires further investigation. Experts suggested the establishment of an international (rathen than just a European) umbrella (or network) organization, which would establish common operating procedures.JRC.DDG.J.2-The economics of climate change, energy and transpor

The BRIF (Bioresource Research Impact Factor) as a tool for improving bioresource sharing in biomedical research

The central aim of the BRIF (Bioresource Research Impact Factor) initiative is to construct a quantitative parameter to evaluate bioresources, modeled to some degree on the Journal Impact Factor (JIF), and to provide guidance and methodology for optimizing recognition of bioresources, their use and their sharing at international level. To implement this concept an international working group has been set up. Specific tasks have been assigned to several sub-groups: BRIF digital identifier schemes; BRIF parameters, measures and indicators; journal guidelines for resource citing and referencing; policies for bioresource access and sharing. These are discussed in the present manuscript

La situation-problème mathématique à l’école primaire : ce que les conceptions d’enseignantes nous révèlent

Cet article expose les conceptions d’enseignantes d’une école primaire quant à la notion de situation-problème mathématique. L’analyse d’artéfacts culturels, d’un questionnaire et d’une entrevue semi-dirigée a permis non seulement de documenter les conceptions des enseignantes, mais également de rendre compte de la complexité de leurs transformations au regard de la culture scolaire. À l’issue de cette recherche, nous avons dressé quatre profils d’enseignantes selon les caractères uniforme/diversifié et incertain/assumé de leurs conceptions. Ces résultats révèlent la nécessité de considérer le point de vue de l’enseignante ainsi que son milieu afin de viser un développement professionnel fécond.This article exposes elementary school teachers’ conceptions of situational problems in mathematics. The analysis of cultural artifacts, a questionnaire, and a semi-structured interview allowed not only to document teachers’ conceptions but also to reflect upon the complexity of their transformations with respect to school culture. Four teachers’ profiles were highlighted, based on the uniformed vs diverse or uncertain vs assumed characteristics of their conceptions. These results reveal the need to consider the teachers’ point of view and their context to aim for fruitful professional development.Este artículo estudia las concepciones de los maestros de una escuela de primaria sobre las situaciones problema en matemáticas. El análisis de artefactos culturales, de un cuestionario y de una entrevista semiestructurada contribuyeron a documentar las concepciones de los maestros, además de dar cuenta de la complejidad de sus transformaciones con respecto a la cultura escolar. Basados en esta investigación, construimos cuatro perfiles de maestros según las características uniforme/diversa e incierta/asumida de sus concepciones. Estos resultados ponen de manifiesto la necesidad de tener en cuenta el punto de vista de los maestros y su entorno escolar para tratar de lograr un desarrollo profesional fructífero

L’aménagement flexible de la classe : le point de vue d’enseignantes du primaire au Québec

Bien que l’aménagement flexible de la classe ait connu un regain d’intérêt dans le milieu scolaire au cours de la dernière décennie, encore relativement peu de recherches se sont intéressées à cette pratique. Cette étude exploratoire trace un portrait des perceptions d’enseignantes quant à leurs motivations et inspirations à opter pour cette pratique, à leurs intentions et à leur manière de la mettre en œuvre, aux défis rencontrés, aux bénéfices perçus, ainsi qu’aux ressources et au soutien sur lesquelles elles ont pu compter. Pour ce faire, 27 enseignantes du primaire ont été interrogées en lien avec ces dimensions et 6 d’entre elles ont également participé à des entretiens semi-dirigés individuels. Les résultats indiquent que l’aménagement flexible de la classe pourrait favoriser la différenciation en permettant de mieux répondre aux besoins des élèves, ainsi qu’à ceux des enseignantes.Despite a growing interest for flexible classrooms in this past decade, few studies have been initiated to investigate this strategy. This exploratory study focusses on teachers’ motivations and inspirations, intentions and ways of implementing flexible classroom, challenges encountered, perceived benefits, and available resources and support helping to promote this type of layout. To do so, an online survey was conducted with 27 elementary school teachers to get their perception about the aforementioned topics ; 6 of them also participated in an individual semi-structured interview. Results show that flexible classrooms may result in enhancing differentiated instruction, as it has the potential to answer pupils’ needs, as well as meeting some needs of teachers themselves

A European Survey on Biobanks: Trends and Issues

Biobanks have recently gained great significance for research and personalised medicine, being recognised as a crucial infrastructure. At the same time the widely varied practices in biobanking may also pose a barrier to cross-border research and collaboration by limiting access to samples and data. Nevertheless, the extent of the actual activities and the impact of the level of networking and harmonisation have not been fully assessed. To address these issues and to obtain missing knowledge on the extent of biobanking in Europe, the Institute for Prospective Technological Studies (IPTS) of the European Commission's Joint Research Centre, in collaboration with the European Science and Technology Observatory (ESTO), conducted a survey among European biobanks. In total, 126 biobanks from 23 countries responded to the survey. Most of them are small or medium-sized public collections set up either for population-based or disease-specific research purposes. The survey indicated a limited networking among the infrastructures. The large majority of them are stand-alone collections and only about half indicated to have a policy for cross-border sharing of samples. Yet, scientific collaborations based on the use of each biobank appear to be prominent. Significant variability was found in terms of consent requirements and related procedures as well as for privacy and data protection issues among the biobanks surveyed. To help promote networking of biobanks and thus maximise public health benefits, at least some degree of harmonisation should be achieved.JRC.DDG.J.2-The economics of climate change, energy and transpor