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"Introduction" [2019] ELECD 469; in Minssen, Timo; Herrmann, R Janne; Schovsbo, Jens (eds), "Global Genes, Local Concerns" (Edward Elgar Publishing, 2019) ix

Book Title: Global Genes, Local Concerns

Editor(s): Minssen, Timo; Herrmann, R Janne; Schovsbo, Jens

Publisher: Edward Elgar Publishing

ISBN: 9781788116183

Section Title: Introduction

Number of pages: 8

Extract:

Introduction MUCH ADO ABOUT SOMETHING: LEGAL, ETHICAL, AND SCIENTIFIC CHALLENGES IN INTERNATIONAL BIOBANKING AND TRANSLATIONAL EXPLOITATION The significance of large-scale, interoperable biobanks as knowledge institutions and research infrastructures in today's life science research can hardly be overestimated. Biobanks allow researchers with different scientific expertise to analyse large and diverse collections of human biological material (HBM), as well as genetic, clinical, health, and other personal data of donors. Hence, it is no surprise that multiple types of biobanks are being established around the globe with very different financial, organizational, and legal setups. These include biobanks of various sizes that may be disease-centric, population-based, genetic or DNA/RNA, project-driven, tissue type, multiple specimen type, commercial, or virtual biobanks.1 While their aims and ambitions may vary considerably, many are created to operate for several decennia and with the aim to provide a valuable resource and infrastructure that can be accessed by numerous research projects and by a great variety of stakeholders with different objectives. These may include private companies, university researchers, research foundations, governmental bodies, or "hybrid" consortia in the framework of private­public partnerships (PPPs). The increasing significance and complexity of biobanking requires substantial investments in the creation, organization, and maintenance of collections of HBM and the "big data" stored in biobanks. This highlights the importance of effective governance and use of biobanks and raises the question of how to deal with a great variety of scientific, ethical, and legal challenges. This book encompasses a broad ...


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