Legalising Mitochondrial Donation: Enacting Ethical Futures in UK Biomedical Politics
Published by Palgrave Pivot
ISBN-10: 9783319746449, ISBN-13: 978-3319746449
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There are few areas of science more fiercely debated than assisted reproduction. Technologies initially developed to enable infertile individuals to have longed-for children have advanced, changing and re-defining the possibilities of human reproduction. This reproductive revolution has been widely contested in numerous arenas including the media, public, science, law, ethics and policy.
It is fitting that 'Legalising Mitochondrial Donation: Enacting Ethical Futures in UK Biomedical Politics', by Rebecca Dimond and Neil Stephens, was published in the year of IVF's 40th anniversary, illustrating just how far science has come over the past four decades.
This book is a timely and original account of the legalisation of one of the most fiercely debated reproductive technologies of recent years – mitochondrial donation. This treatment is perhaps best understood as a variation of IVF techniques that aim to replace the damaged mitochondria in a woman's egg by using part of a donated egg from a healthy individual.
The journey towards legal approval of mitochondrial donation is told from the perspective of the institutions and individuals involved in the debate, through interviews with stakeholders detailing their reflections on the policy process and analysis of public documents and parliamentary debates.
Exploring this journey, Dimond and Stephens ground their approach in sociology and science and technology studies, providing a unique take on an issue that has been the subject of vast and wide-ranging debate. Where others have focused on the philosophical implications of mitochondrial donation or evaluations of the risks and benefits, the authors here aim to identify the practices that work to bring futures into being, to understand how these debates made mitochondrial donation knowable, desirable, ethical and sanctionable – the 'notion of enacting an ethical future'.
To explain this, they guide the reader through a complex history, beginning with a brief explanation of the science followed by a timeline identifying key stages of success and progress. Into this timeline fits the public and backstage work of those interviewed and the official reports from organisations that played key roles in the process towards parliamentary approval.
The authors argue that the legalisation of mitochondrial donation can be seen as the latest step in a collective idea of social life and social order in the UK. This is reflected in the scientific and technological projects around embryo and human tissue research and use undertaken in the UK.
For Dimond and Stephens, the established view was likely to be favourable to licencing mitochondrial donation, given the typically liberal but tightly regulated approach taken by the UK. However, as they point out, those supporting legalisation could not have guided this path without significant labour of an emotional, clinical, embodied, promissory, bureaucratic and ethical nature. This project seeks to draw out accounts of such work, helping us to better understand how mitochondrial donation came to be legally accepted.
This book may not be intended for the lay reader, given the intricate theoretical lens through which accounts are examined. However, it still provides a valuable and informative explanation of the UK's approach to a particularly controversial reproductive technology for anyone with an interest in the subject.
Building on a helpful introduction to the background and science involved, the book moves to introduce actors on each side of the debate in turn. Chapters two and three explore accounts from stakeholders on both sides of what the authors term the clusters for and against. Interviewing both individuals and those representing organisations, Dimond and Stephens begin to analyse the role of key players in the debate.
Noting the pivotal role of individuals such as Professor Sir Doug Turnbull of Newcastle University and organisations like Progress Educational Trust (which publishes BioNews), the Science Media Centre and the Wellcome Trust, a collective effort by the 'cluster for' to legalise mitochondrial donation is acknowledged. Arguably, public engagement events by organisations such as PET and interviews by and with key stakeholders were crucial in rendering mitochondrial donation 'knowable' and 'desirable'.
In contrast, the 'cluster against' includes organisations such as the Roman Catholic academic institute, the Anscombe Bioethics Centre, charities such as Christian Action, Research and Education (CARE) and the Christian Medical Fellowship, the public interest group Human Genetics Alert and individuals such as Dr Ted Morrow of the University of Sussex. This cluster is found to be unwilling and unable to mobilise around a centralised and connected campaign.
Hearing the retrospective opinions of important actors in the period leading up to the parliamentary debate and the vote to approve mitochondrial donation gives interesting insight into the mechanism of UK biomedical politics. The book tries to present a balanced account, but at times it feels like the 'losing side' are out to score points more than provide a genuine reflection. The suggestion of appointment bias in the membership of the board of the Human Fertilisation and Embryology Authority (HFEA) is a good example of this.
Elsewhere, the book explores how stories about the suffering of patient families became an important part of narrative, along with policy work by the Nuffield Council on Bioethics, the HFEA and the Department of Health. The result is that the authors are able to provide a rich inquiry into the intense period of scientific and ethical review, public consultation and parliamentary debate.
Dimond and Stephens present a detailed overview of the journey of mitochondrial donation from scientific proof of concept to a legally and ethically approved, knowable and desirable treatment. This allows the reader to better navigate the process and better understand the roles played by those involved in shaping the course of the discussion.
In all, this book provides an interesting and unique insight into the relationship between science, policy and politics in the journey towards the legalisation of controversial technologies. Moving forward, it will be interesting to watch future scientific developments in human reproduction such as in vitro derived gametes, from the same perspective. Though, whether they will enjoy similar campaign success remains to be seen.
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