Biobanks and Tissue Research - The Public, the Patient and the Regulation

The research field of biobanks and tissue research is highly promising. Many projects around the globe are involved in the collection of human tissue and health data for research purposes. These initiatives are driven by the perspective of decisive breakthroughs in the knowledge of the genetic pathways involved in widespread diseases. However, there are considerable ethical and legal challenges to be considered as well. These challenges encompass the use of body material for research purposes, the misuse of genetic and other health data by third parties, trust in science and medicine, concerns regarding privacy, use of genetic data for forensic applications by the state and the police, and regulatory issues. This volume is divided into three parts: the inclusion of the public, the rights of donors and patients, examples and recommendations for the future of tissue research. It presents a comprehensive overview of the most important topics in the field by renowned scholars in medical ethics and biolaw.

List of contents

Biobanks, tissue research and the public.- Public trust and public bodies: The regulation of the use of human tissue for research in the United Kingdom, Julie Kent, Ruud ter Meulen.- Biobanks and research: scientific promise and regulatory challenge, Bernice S. Elger, Nikola Biller-Andorno.- A sense of entitlement: individual vs. public interest in human tissue, Nils Hoppe.- Social aspects of biobanking: Beyond the public/private distinction and
inside the relationship between the body and identity
Federico Neresini.- The Rights of donors and patients.- One sample, one share! A proposal to redress an inequity with equity
, Jasper A. Bovenberg.- Research on human biological materials: What consent is needed, and when. Eugenijus Gefenas, Vilius Dranseika, Asta Cekanauskaite, Jurate Jurate Serepkaite.- Reconsidering consent and biobanking, Emma Bullock, Heather Widdows.- What's wrong with forensic uses of biobanks?, Claudio Tamburrini
Regulation of tissue research.- A unified European approach on tissue research and biobanking? A comparison, Katharina Beier, Christian Lenk.- Ireland and the United Kingdom's approaches to regulation of research involving human tissue, Elizabeth Yuko, Adam McAuley, Bert Gordijn.- Legal and ethical aspects of biobanks for research in the European-Mediterranean area, Renzo Pegoraro, Allesandra Bernardi, Fabrizio Turoldo.- The circulation of human body parts and products: when exclusive property rights mask the issue of access, Florence Bellivier, Christine Noiville.- The question of anonymity and privacy in biobanking, Judit Sándor, Petra Bárd.

About the author

Dr. Bert Gordijn ist Universitätsdozent am Fachbereich für Ethik, Philosophie und Geschichte der Medizin an der Universität Nijmegen/Niederlande und klinischer Ethiker an der dortigen Universitätsklinik.

Summary

The research field of biobanks and tissue research is highly promising. Many projects around the globe are involved in the collection of human tissue and health data for research purposes. These initiatives are driven by the perspective of decisive breakthroughs in the knowledge of the genetic pathways involved in widespread diseases. However, there are considerable ethical and legal challenges to be considered as well. These challenges encompass the use of body material for research purposes, the misuse of genetic and other health data by third parties, trust in science and medicine, concerns regarding privacy, use of genetic data for forensic applications by the state and the police, and regulatory issues. This volume is divided into three parts: the inclusion of the public, the rights of donors and patients, examples and recommendations for the future of tissue research. It presents a comprehensive overview of the most important topics in the field by renowned scholars in medical ethics and biolaw.

Additional text

From the reviews:
“Address the legal and policy status of biobanking and tissue research, primarily in Europe … . Since biobanking and tissue research engage such diverse disciplines as health and privacy law, biomedical and IT fields, the book’s audience is likewise diverse. … provides a unique resource for Europeans and non-Europeans … . especially important for those who work on these issues internationally, and those who may not be familiar with the diversity of approaches and insights that can be learned from the European systems.” (Stephanie Solomon, Doody’s Review Service, December, 2011)

Report

From the reviews:
"Address the legal and policy status of biobanking and tissue research, primarily in Europe ... . Since biobanking and tissue research engage such diverse disciplines as health and privacy law, biomedical and IT fields, the book's audience is likewise diverse. ... provides a unique resource for Europeans and non-Europeans ... . especially important for those who work on these issues internationally, and those who may not be familiar with the diversity of approaches and insights that can be learned from the European systems." (Stephanie Solomon, Doody's Review Service, December, 2011)

Product details

• Assisted by: Bert Gordijn (Editor), Christian Lenk (Editor), Judi Sándor (Editor), Judit Sándor (Editor)
• Publisher: Springer Netherlands
• Languages: English
• Product format: Paperback / Softback
• Released: 21.08.2013
• EAN: 9789400737310
• ISBN: 978-94-0-073731-0
• No. of pages: 238
• Dimensions: 155 mm x 238 mm x 10 mm
• Weight: 406 g
• Illustrations: VIII, 238 p.
• Series: The International Library of Ethics, Law and Technology; The International Library of Ethics, Law and Technology
• Subject: Natural sciences, medicine, IT, technology > Medicine > Non-clinical medicine