p-BioSPRE-an information and communication technology framework for transnational biomaterial sharing and access

Biobanks represent key resources for clinico-genomic research and are needed to pave the way to personalised medicine. To achieve this goal, it is crucial that scientists can securely access and share high-quality biomaterial and related data. Therefore, there is a growing interest in integrating biobanks into larger biomedical information and communication technology (ICT) infrastructures. The European project p-medicine is currently building an innovative ICT infrastructure to meet this need. This platform provides tools and services for conducting research and clinical trials in personalised medicine. In this paper, we describe one of its main components, the biobank access framework p-BioSPRE (p-medicine Biospecimen Search and Project Request Engine). This generic framework enables and simplifies access to existing biobanks, but also to offer own biomaterial collections to research communities, and to manage biobank specimens and related clinical data over the ObTiMA Trial Biomaterial Manager. p-BioSPRE takes into consideration all relevant ethical and legal standards, e.g., safeguarding donors’ personal rights and enabling biobanks to keep control over the donated material and related data. The framework thus enables secure sharing of biomaterial within open and closed research communities, while flexibly integrating related clinical and omics data. Although the development of the framework is mainly driven by user scenarios from the cancer domain, in this case, acute lymphoblastic leukaemia and Wilms tumour, it can be extended to further disease entities.

Revealing Cultural Ecosystem Services through Instagram Images : The Potential of Social Media Volunteered Geographic Information for Urban Green Infrastructure Planning and Governance

With the prevalence of smartphones, new ways of engaging citizens and stakeholders in urban planning and govern-ance are emerging. The technologies in smartphones allow citizens to act as sensors of their environment, producing and sharing rich spatial data useful for new types of collaborative governance set-ups. Data derived from Volunteered Geographic Information (VGI) can support accessible, transparent, democratic, inclusive, and locally-based governance situations of interest to planners, citizens, politicians, and scientists. However, there are still uncertainties about how to actually conduct this in practice. This study explores how social media VGI can be used to document spatial tendencies regarding citizens’ uses and perceptions of urban nature with relevance for urban green space governance. Via the hashtag #sharingcph, created by the City of Copenhagen in 2014, VGI data consisting of geo-referenced images were collected from Instagram, categorised according to their content and analysed according to their spatial distribution patterns. The results show specific spatial distributions of the images and main hotspots. Many possibilities and much potential of using VGI for generating, sharing, visualising and communicating knowledge about citizens’ spatial uses and preferences exist, but as a tool to support scientific and democratic interaction, VGI data is challenged by practical, technical and ethical concerns. More research is needed in order to better understand the usefulness and application of this rich data source to governance.