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

LEGISLATIVE BACKGROUND AND PROCEDURAL ARRANGEMENT OF STRATEGIC ENVIRONMENTAL ASSESSMENT IN CHINA AND GERMANY: TAKING SPATIAL PLANNING AS EXAMPLE

Having witnessed significant advancement from an academic aspect and practical experiences, strategic environmental assessment (SEA) in China is still undergoing a series of challenges. These challenges result from the legislative background or procedural arrangement. Moreover, with the increasing significance of spatial planning in China, the integration of SEA into the Chinese spatial planning system is becoming a hot topic; whereas, the practice of SEA in the Chinese spatial planning system is currently rather weak. Against these backgrounds - urgency of the integration of SEA into the spatial planning system, lack of related experiences and a SEA system with challenges in China, and SEA for the spatial planning with abundant experiences and lessons in Germany-, this research takes the form of a comparative study on SEA in China and Germany, using the example of spatial planning. Its primary concern is to identify legislative and institutional differences and similarities between SEA in the two countries and analyse the reasons causing these differences. Based upon these, feasible recommendations are proposed to address these challenges which the Chinese SEA is facing. A total of four SEA cases from China and Germany were described and analysed, and 22 experts were interviewed in the form of semi-structured interviews. The specific objectives of the research are to: • to obtain an overview of the SEA application in Chinese and German spatial planning systems; • to compare legal requirements, institutional and procedural arrangements for SEA between China and Germany, taking the examples of spatial planning; • to identify similarities and distinctions lying in both systems, and explore the reasons and motivations causing them; and • to propose recommendations and suggestions for the optimization of Chinese and German SEA, in particular in the aspects of legal requirements, institutional arrangements and operational procedures. Comparative outcomes indicate both SEA systems possess some similar general requirements while delivering differences as well. Main similarities are embodied in SEA understandings, the establishment of related national legislation and adoption of some common steps, reflecting the two SEA systems are influenced by international SEA development. However, significant differences exist in many aspects, especially regarding SEA modes, application of some stages owned by the individual country as well as the concrete requirements for the same stages which both nations have. Outcomes of this research show different SEA characteristics in the two countries. From the aspect of legislative background, German SEA legislation holds a dynamic nature and highlights communication and cooperation. This communication and cooperation can take place between the EU and Germany, the German federal government and the Federal States or even between Federal States. Comparably, Chinese SEA legislation has less interaction with other planning laws and is mainly dependent on the frequent formulation of related technical guidelines and rules. From procedural arrangements, Germany aims to develop an integrated, highly transparent, efficient and wide participation SEA process while China values the independence of the SEA approach, cherishes experts’ opinions and advantages of the intervention of environmental authorities. Based upon the comparative outcomes, several recommendations to improve the application of SEA in Chinese spatial planning are provided

Aging between Participation and Simulation

This publication aims to initiate an interdisciplinary discourse on the ethical, legal, and social implications of socially assistive technologies in healthcare. It combines practically relevant insights and examples from current research and development with ethical analysis to uncover moral pitfalls at the intersection between the promotion of social participation and well-being, and risks that may diminish the achievement of these ends

Aging between Participation and Simulation

This publication aims to initiate an interdisciplinary discourse on the ethical, legal, and social implications of socially assistive technologies in healthcare. It combines practically relevant insights and examples from current research and development with ethical analysis to uncover moral pitfalls at the intersection between the promotion of social participation and well-being, and risks that may diminish the achievement of these ends

Building on Progress - Expanding the Research Infrastructure for the Social, Economic, and Behavioral Sciences. Vol. 1

The publication provides a comprehensive compendium of the current state of Germany's research infrastructure in the social, economic, and behavioural sciences. In addition, the book presents detailed discussions of the current needs of empirical researchers in these fields and opportunities for future development. The book contains 68 advisory reports by more than 100 internationally recognized authors from a wide range of fields and recommendations by the German Data Forum (RatSWD) on how to improve the research infrastructure so as to create conditions ideal for making Germany's social, economic, and behavioral sciences more innovative and internationally competitive. The German Data Forum (RatSWD) has discussed the broad spectrum of issues covered by these advisory reports extensively, and has developed general recommendations on how to expand the research infrastructure to meet the needs of scholars in the social and economic sciences

A Mixed Methods Study of Health Information Exchange Consent for Persons Living with Human Immunodeficiency Virus

Health information exchange (HIE) has the potential to improve care quality through improved information sharing and coordination of care. In Phase 1, a sociotechnical analysis was conducted at one HIV clinic to explore the interrelated factors that affect the consent of persons living with HIV (PLWH) to electronically share their protected health information (PHI) through a HIE. The findings of the sociotechnical analysis revealed that there is not a single solution that can adequately address the complex, interrelated issues that affect PLWH decision to electronically share PHI. Improvement in the consent process was selected as the target of intervention for Phase 2, which focused on designing and pilot testing a prototype HIE eConsent iPad app at the HIV clinic. A one-group post-test design examined if HIV clinic patients preferred the eConsent or the paper consent. Semi-structured interviews were used to assess overall comprehension of HIE after reading both consents. Over half of the participants favored eConsent as compared to paper consent. The proportion of participants who were able to verbalize essential components of HIE were as follows: more than one component – 35%, one component - 20%, and no component – 45%. While racially and ethnically diverse, the sample was well-educated (50% with a college degree); however, the low comprehension levels suggested that educational attainment was insufficient for HIE comprehension. A hybrid approach that integrates discussion with knowledgeable personnel and multimedia usage may be useful to convey complex information and facilitate HIE comprehension

Policy Networks: Empirical Evidence and Theoretical Considerations

Political governance in modern societies can no longer be conceived in terms of external government control of society but emerges from a plurality of governing agents. In contemporary policy making, governmental and non-governmental actors are interconnected in complex networks of interaction, exchanging information and other resources. This reader presents the results of empirical network studies in a variety of policy sectors and in different countries. It also provides insights into innovative quantitative and qualitative approaches to network analysis.Part One • Theoretical Considerations 1 Introduction: Studying Policy Networks Bernd Marin and Renate Mayntz 2 Policy Networks and Policy Analysis: Scrutinizing a New Analytical Toolbox Patrick Kenis and Volker Schneider Part Two • Policy Networks in National Policy Domains 3 Organizations in Political Action: Representing Interests in National Policy Making Edward O. Laumann and John P. Heinz with Robert Nelson and Robert Salisbury 4 Policy Networks in the German Telecommunications Domain Volker Schneider and Raymund Werle 5 Policy Networks and Change: The Case of High-Tc Superconductors Dorothea Jansen Part Three • Cross-National Variations in Policy Networks 6 Political Exchange in the German and American Labor Policy Domain Franz Urban Pappi and David Knoke 7 Fencing Off: Central Banks and Networks in Canada and the United States William D. Coleman 8 Policy Networks, Opportunity Structures and Neo-Conservative Reform Strategies in Health Policy Marian Döhler 9 The Preconditions for Policy Networks: Some Findings from a Three-Country Study on Industrial Restructuring Patrick Kenis Contributor

Health Literacy Development among People with Chronic Diseases: Advancing the State of the Art and Learning from International Practices

Chronic diseases account for a considerable part of the strain on health care systems and are burdensome for each affected individual and their families. In recent years, the concept of health literacy has been substantially elaborated on, particularly regarding the development and implementation of interventions at different levels, efforts to improve its measurement, and the role of communities and organizations. While a range of advancements are uncontested, specific challenges still revolve around, for example, a thorough application of modern practices of health literacy that focus on societal support of health literacy strengths and response to health literacy challenges; developing, testing, and evaluating strategies for organizational health literacy responsiveness; and improving the co-design, local ownership, and integration of health literacy actions and interventions in communities experiencing vulnerability and disadvantage. This Special Issue showcases research addressing these and further aspects about developing health literacy - particularly among people with chronic diseases - by which we mean advancements in health practices, organizations, and policies that create enabling environments in which people have the necessary knowledge and feel confident accessing, understanding, and using health information and services

Reviews and Perspectives on Smart and Sustainable Metropolitan and Regional Cities

The notion of smart and sustainable cities offers an integrated and holistic approach to urbanism by aiming to achieve the long-term goals of urban sustainability and resilience. In essence, a smart and sustainable city is an urban locality that functions as a robust system of systems with sustainable practices to generate desired outcomes and futures for all humans and non-humans. This book contributes to improving research and practice in smart and sustainable metropolitan as well as regional cities and urbanism by bringing together literature reviews and scholarly perspective pieces, forming an open access knowledge warehouse. It contains contributions that offer insights into research and practice in smart and sustainable metropolitan and regional cities by producing in-depth conceptual debates and perspectives, insights from the literature and best practice, and thoroughly identified research themes and development trends. This book serves as a repository of relevant information, material, and knowledge to support research, policymaking, practice, and the transferability of experiences to address challenges in establishing smart and sustainable metropolitan as well as regional cities and urbanism in the era of climate change, biodiversity collapse, natural disasters, pandemics, and socioeconomic inequalities