4 - The Public Interest in Health Research

Summary

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.