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"Introduction" [2019] ELECD 903; 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

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 institu-
tions 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 ambi-
tions 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 substan-
tial 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 ...