Genetic Privacy: An Evaluation of the Ethical and Legal Landscape

This book provides an analysis of the ways in which privacy has and will continue to shape biomedical research in Singapore and in key scientific jurisdictions. The editors and authors have an intimate knowledge of policy work relating to privacy in biomedical research, and the focus of the book includes the ways in which local and international forces have influenced the form and substance of both privacy and biomedical sciences in public - private interactions. Together, the authors offer a comparative account of the different notions and expressions of privacy, as considered in the wider context of the mutual shaping of biomedical sciences and regulatory efforts. The book reviews the work of the BAC in Singapore and comparable institutions (or policy frameworks) in select jurisdictions by placing them within the broader cultural, social and political discourses that have emerged in relation to the biomedical sciences since the turn of the 21st century. This book is intended to make a substantive contribution to the rapidly emerging field of bioethics. Ethical discussions in the book include consideration of genetics, biobanking and research with human participants, and focus on likely future developments as well as the past. This book is the first of its kind in providing a detailed account of a privacy framework that applies to biomedical research in Singapore (and in select jurisdictions). Many of the contributors to this book have been personally involved in privacy-related policy work, and hence they write with an authoritative first-hand knowledge that scholars in bioethics and public policy may appreciate. Scholars and policy makers may find the Singaporean experience (and comparable development elsewhere) to be a valuable resource, as the approach has been to make the ethical governance of research in Singapore consistent with international best practice while observing the requirements of a properly localised application of universally accepted principles.