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 comple
Ethical issues in governing biobanks: global perspectives
β Scribed by Bernice Elger
- Publisher
- Ashgate Publishing
- Year
- 2008
- Tongue
- English
- Leaves
- 268
- Category
- Library
No coin nor oath required. For personal study only.
β¦ Synopsis
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.In this volume, the Geneva International Academic Network (GIAN), the Department of Ethics, Trade, Human Rights and Health Law (ETH) of the World Health Organization, and the Institute of Biomedical Ethics of Geneva University have joined together to study the conditions under which genetic databses can be established, kept, and made use of in an ethically acceptable way. The work includes a comprehensive review of the scientific literature along with a comparative analysis of existing normative frameworks. Unresovled and controversial issues are taken up in empirical studies and the results combined with analysis to produce draft recommendations towards an international framework.The book will be a valuable resource for researchers and practitioners working in the development, maintenance and regulation of biobanks.
β¦ Table of Contents
Contents......Page 6
Notes on the Contributors......Page 8
Acknowledgements......Page 10
1 Introduction: Biobanks, Genomics, and ResearchβA Nightmare for Public Policy Makers?......Page 12
PART I: RESEARCH BIOBANKS: CURRENT STATUS AND DEBATES......Page 22
2 Biobanks in the Literature......Page 24
3 Guidelines on Biobanks: Emerging Consensus and Unresolved Controversies......Page 34
PART II: CONSENSUS AND CONTROVERSIES AMONG INTERNATIONAL EXPERTS CONCERNING ISSUES RAISED BY GENETIC DATABASES......Page 48
4 Ethical Issues Regarding Research Biobanks: Aims, Methods, and Main Results of a Qualitative Study Among International and US Experts......Page 50
5 Consent and Use of Samples......Page 68
6 Consent to Research Involving Human Biological Samples Obtained During Medical Care......Page 100
7 Collective Consent......Page 132
8 Withdrawal of Consent and Destruction of Samples......Page 142
9 Anonymization and Coding......Page 178
10 Informing Participants about Research Results......Page 200
11 Ownership of Samples and Data and Territorial Restrictions Concerning Data and Samples beyond National Boundaries......Page 208
12 Public Domain Sharing, Patents, and Fees Resulting from Research Involving Genetic Databases......Page 218
13 Benefit-sharing and Remuneration......Page 228
14 Transfer of Samples and Sharing of Results: Requirements Imposed on Researchers......Page 242
PART III: SHAPING THE FUTURE LEGAL AND ETHICAL DEVELOPMENT OF GENETIC DATABASES......Page 248
15 Towards an International Framework: Results of a Meeting of an International Group of Scholars and Scientists Involved in Legal and Practical Issues of Biobanks......Page 250
16 Biobanks and Genomic Research: What Shape the Future?......Page 258
C......Page 264
G......Page 265
K......Page 266
S......Page 267
W......Page 268
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