Full Description
Large-scale, interoperable biobanks are an increasingly important asset in today's life science research and, as a result, multiple types of biobanks are being established around the globe with very different financial, organizational and legal set-ups. With interdisciplinary chapters written by lawyers, sociologists, doctors and biobank practitioners, Global Genes, Local Concerns identifies and discusses the most pressing issues in contemporary biobanking.This timely book addresses pressing questions such as: how do national biobanks best contribute to translational research?; What are the opportunities and challenges that current regulations present for translational use of biobanks?; How does inter-biobank coordination and collaboration occur on various levels?; and how could academic and industrial exploitation, ownership and IPR issues be addressed and facilitated? Identifying that biobanks foundational and operational set-ups should be legally and ethically sound, while at the same time reflecting the hopes and concerns of all the involved stakeholders, this book contributes to the continued development of international biobanking by highlighting and analysing the complexities in this important area of research.
Academics in the fields of law and ethics, health law and biomedical law, as well as biobank managers and policymakers will find this insightful book a stimulating and engaging read.
Contributors include: T. Bossow, T.A. Caulfield, B.J. Clark, Å. Hellstadius, J.R. Herrmann, K. Høyer, M. Jordan, J. Kaye, N.C.H. Kongsholm, K. Liddell, J. Liddicoat, M.J. Madison, T. Minssen, B. Murdoch, W. Nicholson Price II, E. Ortega-Paino, M. Prictor, M.B. Rasmussen, K. Sargsyan, J. Schovsbo, A.M. Tupasela, E. van Zimmeren, F. Vogl, H. Yu, P.K. Yu
Contents
Contents:
Introduction
Part I - Biobanks, Big Data and Modes of Collaboration
1. Big Data and the ethics of detail: the role of ethics work in the making of a cross-national research infrastructure for genetic research
Klaus Hoeyer, Aaro Tupasela, Malene Bøgehus Rasmussen
2. Biobanks as Knowledge Institutions
Michael J. Madison
Part II - Biobanks, translational medicine and tech transfer
3. Biobanks as Innovation Infrastructure for Translational Medicine
W. Nicholson Price II
4. Responsible Use of Human Biosamples in the Bioscience Industries
Brian J Clark and Tina Bossow
Part III - Biobanks, Human Rights and Patient Involvement
5. Biobanking, Scientific Productions and Human Rights
Peter K. Yu
6. You told me, Right? - Free and Informed Consent in European Patent Law
Åsa Hellstadius and Jens Schovsbo
7. Dynamic Consent and Biobanking - A Means of Fostering Sustainability?
Jane Kaye and Megan Prictor
8. Generating Trust in Biobanks within the Context of Commercialization: Can Dynamic Consent Overcome Trust Challenges?
Esther van Zimmeren
9. Exploitation and vulnerabilities in consent to biobank research in developing countries
Nana Cecilie Halmsted Kongsholm
10. Biobanking and the Consent Problem
Timothy Caulfield and Blake Murdoch
Part IV - Biobanks, Guidelines and Good Governance
11. Responsible Research and Innovation and the Advancement of Biobanking and Biomedical research
Helen Yu
12. Do we need an expiration date for biobanks?
Franziska Vogl and Karine Sargsyan
13. Biobanks and Biobank Networks
Eva Ortega-Paíno and Aaro Tupasela
14. IP Policies for Large Bioresources: the fiction, fantasy and future of openness
Kathleen Liddell, Johnathan Liddicoat and Matthew Jordan
Index
