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This chapter provides an account of Graeme Laurie’s research with a specific focus on his commitment to the shift from law on the page to law in action. It draws, in particular, on his work in relation to the role of the public interest in health research regulation. First, the chapter considers the significance of Graeme’s contributions on this topic in his monograph Genetic Privacy, before turning to how this has been operationalised through his work with the Scottish Informatics Programme (SHIP) and the Administrative Data Research Network (ADRN) Scotland. In considering Graeme’s legacy, the chapter outlines how he has both delivered new and innovative governance frameworks that are able to meet the challenges of health research in the twenty-first century and, at the same time, inspired a community of scholars to engage with the public interest, a previously neglected concept.
This chapter provides an introduction to the concept of ‘the public interest’ in health research regulation (HRR). It considers two key ways that the public interest is constructed in HRR: namely as a legal device and through empirical evidence of the views of publics. To appreciate the scope of this concept, the public interest is set in its broader context, i.e. beyond HRR, highlighting that, historically, it has been a contested concept that is difficult to define in the abstract. Next, the public interest is situated within HRR, paying attention first to how it features in the HRR legal landscape and then how this is constructed through the views of publics (with specific reference to the use of identifiable health data for research). Both conceptualisations are analysed with reference to the key challenges and opportunities that they present before a holistic concept of the public interest in HRR is proposed and consideration given to how this may be operationalised in practice.
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.