基本説明
Critically examines the current governance structures for biobanks in England and Wales.
Full Description
Biobanks are proliferating rapidly worldwide because they are powerful tools and organisational structures for undertaking medical research. By linking samples to data on the health of individuals, it is anticipated that biobanks will be used to explore the relationship between genes, environment and lifestyle for many diseases, as well as the potential of individually-tailored drug treatments based on genetic predisposition. However, they also raise considerable challenges for existing legal frameworks and research governance structures. This book critically examines the current governance structures in place for biobanks in England and Wales. It shows that the technologies, techniques and practices involved in biobanking do not always conform neatly to existing legal principles and frameworks that apply to other areas of medical research. Using a socio-legal approach, including interview data gathered from the scientific community, this book provides unique insights and makes recommendations about appropriate governance mechanisms for biobanking in the future. It also explores the issues around the secondary use of information, such as consent and how to protect privacy, when biobanks are accessed by a number of different third parties. These issues have relevance both within England and Wales and to a wide international audience, as well as for other areas where large datasets are used.
Contents
Part I Setting the Scene
1. From an Idea to a Project
Jane Kaye, Susan MC Gibbons, Catherine Heeney, Michael Parker and Andrew Smart
2. Embedding Biobanks in a Changing Context
Jane Kaye
Part II Key Legal and Sociological Findings
3. Mapping the Regulatory Space
Susan MC Gibbons
4. Dynamic Networks of Practice
Catherine Heeney
5. Governance in Practice: Patterns of Awareness and Engagement
Susan MC Gibbons and Andrew Smart
6. General Attitudes to Governance
Susan MC Gibbons and Andrew Smart
7. Attitudes to Particular Laws and Governing Bodies
Susan MC Gibbons and Andrew Smart
8. Preferences for Governance
Susan MC Gibbons and Andrew Smart
9. Enacting Governance—The Case of Access
Catherine Heeney and Andrew Smart
Part III Reflections, Ramifications and Recommendations
10. Reflections on Practice and Governance
Jane Kaye
11. Ethics and the Governance of Biobanks
Catherine Heeney and Michael Parker
12. Conclusions
Jane Kaye, Susan MC Gibbons, Catherine Heeney, Michael Parker and Andrew Smart
