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

ISBN-13: 9789400737310 / Angielski / Miękka / 2013 / 238 str.

Christian Lenk; Judit Sandor; Bert Gordijn

Opis

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.

Recenzje

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)

Spis treści

 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 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

 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

O autorze

Bert Gordijn is Chair of Ethics and Director of the Ethics Institute at Dublin City University. He has studied Philosophy and History at the Universities of Utrecht (Netherlands), Strasbourg (France) and Freiburg in Breisgau (Germany). In 1995 he was awarded a doctorate in Philosophy; in 2003 he received a doctorate in Bioethics. He was a Visiting Research Fellow at the Centre for Economic and Social Aspects of Genomics at Lancaster University (UK), the Center for Clinical Bioethics at Georgetown University (USA) and the Fondation Brocher (Switzerland). Bert is Editor-in-Chief of the academic book series The International Library of Ethics, Law and Technology (published by Springer). In addition he is Editor-in-Chief of two peer reviewed journals: Medicine, Health Care and Philosophy (also published by Springer) and Studies in Ethics, Law and Technology (published by Berkeley Electronic Press). Bert has been appointed to the Scientific Advisory Board of the European Patent Organization, the External Science Advisory Panel to the Long-Range Research Initiative of the European Chemical Industry Council and has served on the UNESCO expert committee on ethics and nanotechnology.