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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 reflects on liminality, a guiding concept in the project that brought both authors to Edinburgh and has featured prominently in Graeme Laurie’s most recent work. It introduces the concept of liminality and discusses Laurie’s framing and use of the term before going on to illustrate how both the concept and Laurie’s approach to it have shaped and facilitated further research on the ethics and governance of reproduction. The chapter considers the wider implications of Laurie’s contributions to the field, drawing out some of the key themes of his work on liminality, namely the processual, the experiential and the ‘quality of in-between-ness’. It provides new perspectives by applying these themes to research on the ethics and regulation of surrogacy as well as artificial womb technology. The chapter argues for the relevance of liminality as an analytical framing device, to reveal important lessons for ethics and law beyond the realm of health research regulation. Finally, the opportunity is taken to reflect on Laurie’s guidance as a project leader and the ways in which the authors’ own liminal identities in the project laid the foundation for their future as researchers.
Across most jurisdictions today, researchers who propose to involve humans must first submit an application form to one or several committees of experts, who then assess the ethics of the proposed research. As a result of central role in determining the bounds of ethical research, Research Ethics Committees have been subject to sustained scrutiny. The cumulative charge is that research ethics review by committees promotes a wicked combination of inexpert review, inconsistent opinions, duplicative work, mission creep and heavy-handed regulation of health research. This chapter places this charge at the focal point. In what follows, I chart the process of research ethics review with a view towards arguing that RECs have become regulatory entities in their own right and very much are a form of social control of science. As I detail, while RECs are far from perfect in terms of regulatory design and performance, they do perform, at least in principle, a valuable role in helping to steward research projects towards an ethical endpoint. This chapter also offers a critique of existing work and suggests some future directions for both the regulatory design of research ethics review and also researching the field itself.
This chapter explores the analytical and normative roles solidarity can play when designing health research regulation (HRR) regimes. It provides an introduction to the meanings and practical applications of solidarity, followed by a description of the role solidarity plays in HRR, especially in fostering practices of mutual support between patient organisations and between countries. We illustrate our argument in a case study of HRR, namely the European Union (EU) regulatory regime for research on rare diseases and orphan drugs. The current regime aims to decrease barriers to research on orphan drugs by creating, predominantly financial, incentives for research institutions to take on the perceived increased risks in this area. We show how the concept of solidarity can be used to reframe the purpose of regulation of research on orphan drugs from a market failure problem to a societal challenge in which the nature of barriers is not just financial. This has specific implications for the types of policy instruments chosen to address the problem. Solidarity can be used to highlight the political, social, economic and research value of supporting research on rare diseases and orphan drugs.
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