Governing Biobanks

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.

Auteur

Jane Kaye is Director of the Centre for Health, Law and Emerging Technologies, University of Oxford.

Contenu

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