Biobanks and Tissue Research. the Public, the Patient and the Regulation (The International Library of Ethics, Law and Technology, Vol. 8)

DESCRIPTION

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.

TABLE 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 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