The first ever interdisciplinary handbook in the field, this vital resource offers wide-ranging analysis of health research regulation. The chapters confront gaps between documented law and research in practice, and draw on legal, ethical and social theories about what counts as robust research regulation to make recommendations for future directions. The Handbook provides an account and analysis of current regulatory tools - such as consent to participation in research and the anonymization of data to protection participants' privacy - as well as commentary on the roles of the actors and stakeholders who are involved in human health research and its regulation. Drawing on a range of international examples of research using patient data, tissue and other human materials, the collective contribution of the volume is to explore current challenges in delivering good medical research for the public good and to provide insights on how to design better regulatory approaches. This title is also available as Open Access on Cambridge Core.

Increasing quantities of information about our health, bodies, and biological relationships are being generated by health technologies, research, and surveillance. This escalation presents challenges to us all when it comes to deciding how to manage this information and what should be disclosed to the very people it describes. This book establishes the ethical imperative to take seriously the potential impacts on our identities of encountering bioinformation about ourselves. Emily Postan argues that identity interests in accessing personal bioinformation are currently under-protected in law and often linked to problematic bio-essentialist assumptions. Drawing on a picture of identity constructed through embodied self-narratives, and examples of people's encounters with diverse kinds of information, Postan addresses these gaps. This book provides a robust account of the source, scope, and ethical significance of our identity-related interests in accessing - and not accessing - bioinformation about ourselves, and the need for disclosure practices to respond appropriately. This title is also available as Open Access on Cambridge Core.