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This book presents a comprehensive overview of the field of biobanks and human tissue research, including ethical and legal challenges, regulatory issues, the rights of donors and patients, and examples and recommendations for the future of tissue research.
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.
Comprehensive ethical and legal perspective Focus on the most important discussions in the field Targeting of hot topics like forensic research and biobanking Unique, European perspective Renowned group of international authors
Auteur
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.
Contenu
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.
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