Ethical Issues in Governing Biobanks: Global

Population genomics research drawing on genetic databases has expanded rapidly in recent years. In some cases, this information has been combined with details on individuals' health, lifestyle or genealogy. Protecting the data available from such databases has consequently emerged as a highly complex ethical issue in the health policy arena. This book combines theoretical and empirical research to discuss the development of an international regulatory framework to provide practical guidance.

Introduction: biobanks, genomics, and research - a nightmare for public policy makers?
Research Biobanks
Current Status and Debates
Biobanks in the literature
Guidelines on biobanks: emerging consensus and unresolved controversies
Consensus and Controversies Among International Experts Concerning Issues Raised
Ethical issues regarding research biobanks: aims, methods, and main results of a qualitative study among international and US experts
Consent and use of samples
Consent to research involving human biological samples obtained during medical care
Collective consent
Withdrawal of consent and destruction of samples
Anonymization and coding
Informing participants about research results
Ownership of samples and data and territorial restrictions concerning data and samples beyond national boundaries
Public domain sharing, patents, and fees resulting from research involving genetic databases
Benefit-sharing and remuneration
Transfer of samples and sharing of results: requirements imposed on researchers
Shaping the Future Legal and Ethical Development of Genetic Databases
Towards an international framework: results of a meeting of an international group of scholars and scientists involved in legal and practical issues of biobanks
Biobanks and genomic research: what shape the future?
Index
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Ethical Issues in Governing Biobanks: Global Perspectives

Summary

Table of Contents

Supplemental Materials