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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.
Global health emergencies (GHEs) are situations of heightened and widespread health crisis, that usually require the attention and mobilisation of actors and institutions beyond national borders. Conducting research in such contexts is both ethically imperative and requires particular ethical and regulatory scrutiny. While global health emergency research (GHER) serves a crucial function of learning how to improve care and services for individuals, it is difficult to fully capture the range of ethical considerations that arise, let alone provide a one-size-fits-all solution to such question. Using illustrations drawn from research projects conducted during GHEs, in this chapter we discuss key ethical issues and governance implications of GHER, beyond those traditionally associated with biomedical research, and explore the future direction of oversight for GHER. After setting out the complex context of GHER, we illustrate the various ethical issues associated with research and in justifying research, including considerations related to context, social value and engagement with the affected communities. Finally, we explore some of the new orientations and lenses in the governance of GHER through recent guidelines and developing practices.
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.