Governing Biobanks: Understanding the Interplay between Law and Practice

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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.

Governing Biobanks: Understanding the Interplay between Law and Practice Review

Collections of biospecimens and genetic data, commonly known as biobanks, have become a major biological resource but have also raised concerns about the risk of inappropriate use of the col�lected materials. In response to these concerns, a variety of privacy, human research, and ad hoc regulations have been imposed on biobanks, and scholars have produced a sizeable literature from the perspectives of ethics, law, and social science. Since 2007 at least ten books about biobank governance have appeared in English, of which the one reviewed here is the most recent. Unlike its predecessors, this volume is not focused on analysis of issues mainly in the abstract, but describes and analyzes the actual experience of persons involved in the operation of biobanks, on the receiving end of the governance measures. It provides a useful empirical addition to the theoretical commentary. My only criticism is a reader's lament that the multi-authored book could have been organized more concisely to reduce repetition.

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