Legalising Mitochondrial Donation : Enacting Ethical Futures in UK Biomedical Politics

In 2015 the UK became the first country in the world to legalise mitochondrial donation, a controversial germ line reproductive technology to prevent the transmission of mitochondrial disease. Dimond and Stephens track the intense period of scientific and ethical review, public consultation and parliamentary debates preceeding the decision. They draw on stakeholder accounts and public documents to explore how patients, professionals, institutions and publics mobilised within ‘for’ and ‘against’ clusters, engaging in extensive promissory, emotional, bureaucratic, ethical, embodied and clinical labour to justify competing visions of an ethical future. They describe how this decision is the latest iteration of a UK sociotechnical imaginary in which the further liberalization of human embryo research and use is rendered legitimate and ethical through modes of consultation and permissive but strictly regulated licensing. Overall, this book presents a timely, multi-dimensional, and sociological account of a globally significant landmark in the history of human genetics, and will be relevant to those with an interest in genetics, Science, Technology and Society, the sociology of medicine, reproductive technology, and public policy debate. Front Matter ....Pages i-vii Mitochondrial Donation and UK Biomedical Politics (Rebecca Dimond, Neil Stephens)....Pages 1-25 Contesting Mitochondrial Donation: The Cluster For (Rebecca Dimond, Neil Stephens)....Pages 27-45 Contesting Mitochondrial Donation: The Cluster Against (Rebecca Dimond, Neil Stephens)....Pages 47-67 Policy Work and Legitimacy at the Nuffield Council on Bioethics, the Human Fertilisation and Embryology Authority, and the Department of Health (Rebecca Dimond, Neil Stephens)....Pages 69-88 Campaigning: Contested Meanings, Patient-Families, and Last Minute Labours (Rebecca Dimond, Neil Stephens)....Pages 89-107 The Parliamentary Debates (Rebecca Dimond, Neil Stephens)....Pages 109-130 Enacting Ethical Futures (Rebecca Dimond, Neil Stephens)....Pages 131-142 Back Matter ....Pages 143-147 "In 2015 the UK became the first country in the world to legalise mitochondrial donation, a controversial assisted reproductive technology. Across this book, we detail how institutions, activist groups, scientists, parliamentarians, patients and publics engaged in extensive labour to support, justify and legitimise their positon within hard fought campaigns. We also consider how the technology was given meaning through policy consultations, review and debates. By drawing on a unique dataset of interviews with stakeholders, we argue that the legalization of mitochondrial donation is the latest iteration of a particular UK sociotechnical imaginary in which embryo research and use is rendered ethical through a permissive but highly scrutinised system." -- From abstact in chapter 1