Legalising Mitochondrial Donation: Enacting Ethical Futures in Uk Biomedical Politics

Springer Verlag (2018)
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Abstract

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.

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Chapters

Enacting Ethical Futures

The legalisation of mitochondrial donation is the latest iteration of a particular UK sociotechnical imaginary around human embryo research and use; one in which strict but permissive oversight and licensing from the Human Fertilisation and Embryology Authority operates to legitimise practice. This ... see more

The Parliamentary Debates

Parliamentary debates took place in the House of Commons and House of Lords in February 2015, when each House voted overwhelmingly in support of legalising mitochondrial donation. In this chapter we explore key sites of contestation as revealed in these parliamentary exchanges: patient-families; sli... see more

Campaigning: Contested Meanings, Patient-Families, and Last Minute Labours

The process of campaigning lasted several years, although the intensity increased as the parliamentary votes drew near. Here we identify a set of campaign strategies and central issues undergoing contestation, specifically the development of an Interpretive package used to render the techniques know... see more

Policy Work and Legitimacy at the Nuffield Council on Bioethics, the Human Fertilisation and Embryology Authority, and the Department of Health

The mitochondrial donation debates were punctuated by a set of reports produced by key institutional bodies. Here we focus upon three to analyse the boundary and legitimacy work inherent to their conduct. Based on calls for evidence and expert/public consultations, the Nuffield Council on Bioethics ... see more

Contesting Mitochondrial Donation: The Cluster Against

In contrast to the coalition approach of the for-cluster, the against-cluster included a smaller set of institutions and individuals with different reasons for opposition. This cluster were unable and sometimes unwilling to mobilise around a centralised and connected campaign, and operated a set of ... see more

Contesting Mitochondrial Donation: The Cluster For

Operating a legitimate campaign in UK biomedical politics requires labour. We focus on how the group that campaigned for legalisation, here the for-cluster, formed a coalition, describing a strong and collaborative partnership approach involving anticipating what work would be required, identifying ... see more

Mitochondrial Donation and UK Biomedical Politics

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... see more

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