Biobanks and biobank networks are important for high-quality biomedical research, and provide a unique opportunity for the discovery of novel genes for diagnosis and treatment. Despite their importance, biobanks face numerous challenges in terms of quality and comparability of samples. The establishment of common standards, not only for storage and processing of biospecimens but also for discovery and validation, as well as harmonized data from those samples has become one of the major challenges that biobankers face and are working on. In this chapter, we argue that biobanks and biobank networks play a pivotal role in biomedical research. Biobanks are central to the enactment and implementation of collection practices in which good-quality samples and related information are collected from the population. This activity is central to the production of good research whose results are both replicable and valid.
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Eva Ortega-Paíno and Aaro Tupasela
W. Nicholson Price II
This chapter briefly describes big data in medicine: the sources of medical data, the promises of medical big data, and a key challenge: data fragmentation. In the second part, it discusses the role of biobanks in medical big data, focusing on their role in infrastructure for innovation and their potential for facilitating translational research.
Michael J. Madison
The chapter describes biobanks as institutions for collection, preservation, curation, and production of knowledge and information, in both material and immaterial forms. That characterization calls for research and comparative analysis of the broad diversity of specific biobanks, using a standardized research framework. Such a framework is identified and described here, as the knowledge commons framework. The chapter describes applications of the framework to biobanks to date and suggests directions for future research.
Shehla Riza Arifeen and Caroline Gatrell
This chapter makes a case for empirical research in regard to British Pakistani managerial and professional women, a group who have remained invisible in organization studies; to give voice to their experiences, to highlight the issues and challenges they are facing as women who have careers, their perceptions of what they are and how they have reached where they are, and where they think they are going, while taking an all-inclusive view of the historical/social/culture/religious context. The chapter undertakes a comprehensive re-examination of the intersectional approach. An approach to gender with ethnicity and with religion and nationality or diaspora is suggested, in order to capture identities and focuses on relationship between gender and other categories of difference, in particular gender. A review of race/ethnicity in organization studies in the UK reveals the homogenizing of ethnicities and a gap, as there is a lack of focused research on a large ethnic group in the UK. The chapter argues for intersectionality as being the most valid method as a means of analysis of a complex phenomenon, as it bridges partly the theoretical gap between critical theory and liberalism or deconstructionist tradition. Empirical research on this marginalized group of women will highlight the structures and systems that are created and maintained. These may be self-created and self-perpetuated, but unless and until voice has been given to their experiences they will remain unknown.
Adrien Alberini and Vincent Pfammatter
Blockchains all have at their core certain key-characteristics, such as the fact that the system is decentralized and distributed, immutable, and transparent. The consequences of such features are twofold with regard to data protection and privacy. On the one hand, some of these features are at odds with the way we understand privacy in Europe and the fundamental legal principles governing data protection law in this legal order. Indeed, the key features of blockchain systems may be in quite a stark contrast with some fundamental privacy rights under the GDPR, such as for instance the rights of access, rectification or erasure. On the other hand, blockchains may also constitute an opportunity for the protection of personal data, in limiting or even vanishing ‘single point of failure’ issues, alteration of data or data thefts, and increasing security and transparency. In this chapter, the authors analyze the intersection between blockchains and data protection regulations (in particular the GDPR), the good and the bad that emanate from this necessary relationship, and they explore possible solutions which can be implemented.
Daniel Kraus and Charlotte Boulay
Blockchains are at the source of numerous innovations, be it in the insurance, the financial or the distribution sector, many of which are very promising. However, from the moment innovative technologies appear the issue of the stimulation of their development arises. Most of the time, blockchain-related innovations are developed in an open-source or free software framework. Nevertheless, more and more patents have been filed on blockchain applications. Hence, how are the philosophies driving blockchain communities and intellectual property compatible? Are there any risks that arise from the filing of patents on the developments of blockchain-based technologies and business methods? And finally, are blockhains going to revolutionalize the intellectual property system itself? These are the issues that the present chapter attempts to deal with.
Blockchain is probably the most disruptive and revolutionary technology since the advent of the World Wide Web in the 1990s. Blockchain became known, above all, as the technology behind the bitcoin cryptocurrency. However, its potential still remains largely unexploited and according to experts, opportunities are almost ‘endless’, both in financial and non-financial sectors. Challenges and opportunities in this field vary greatly from person to person depending notably if they are researchers, practitioners or regulators. After a short introduction in order to place the analysis in its context, this chapter will focus on three selected opportunities, namely blockchain as a new payment method (cryptocurrency), as a new method for funding innovation (ICO/TGE) and as a new organizational structure (DAO); it will then focus on three selected challenges, namely regulatory, environmental and governance. The author then questions in a forward-looking manner whether blockchain may be seen as a gateway from the third to the fourth industrial/digital revolution.
Edited by Daniel Kraus, Thierry Obrist and Olivier Hari
The present paper analyses some interactions between the resolution framework and the Charter of Fundamental Rights of the European Union (CFREU). It provides an overall view of the relevant provisions in the legislative text and the Recitals as well as a more detailed analysis of the interplay between the provisions granting resolution authorities the power to bail-in liabilities and the fundamental right to property recognised in Article 17 CFREU. In this respect, it also provides reference to the recent decision of the European court of Justice (ECJ) in the Kotnik case (C-526/14) and provides an assessment of points of contact and differences between the stance taken by the Court and the provisions of BRRD and SRMR.
This chapter addresses national and international efforts of post-conflict reconstruction and reconciliation in societies emerging from armed conflict or authoritarian regimes. Such efforts place great emphasis on the need for accountability for past human rights violations. The assumption behind these efforts is that justice must be addressed if the goal is a stable, long-lasting peace. Based on a discussion of victims’ rights and the links between justice and peace, this chapter argues that transitional justice is a constitutive element of positive peace because it contributes to rebuild relations of trust in post-conflict societies. The chapter addresses the main transitional justice mechanisms applied by countries seeking to establish some form of accountability for past violations: prosecutions, truth commissions, and victim reparations, providing examples from specific transitional justice experiences in Latin America.