In 2015 the UK became the first country to legalise two assisted reproductive techniquesâmaternal spindle transfer (MST) and pronuclear transfer (PNT) âcollectively known as mitochondrial donation . It is an in vitro fertilisation (IVF) technique that was developed to prevent the transmission of mitochondrial disease from mother to child, using part of a donated egg to replace faulty mitochondria that could potentially cause disease. Mitochondria contain genetic material, which means the child will inherit nuclear genes from the intending mother and father and mitochondrial genes from the donor, and these genes could be inherited by subsequent generations. This book tells the story of how mitochondrial donation moved from the laboratory towards the clinic in the UK, within a very visible and highly contested policy debate about risks and benefits, rights and wrongs, and appropriate procedures for allowing mitochondrial donation to be legalised. It details significant moments, controversies, and the activities of key stakeholders as they campaigned to support or prevent legalisation. Major institutions such as the Department of Health (DoH) , and the regulatory body the Human Fertilisation and Embryology Authority (HFEA) , were involved in gathering and assessing evidence of the viability of the technology and the appropriateness of changing the law. Such institutional work involved scientific reviews on safety and efficacy , consultations and engagement exercises to assess public understanding and attitudes, calls for evidence to explore ethical issues, government guidance on draft regulations, and debates within UK Parliament . These activities addressed three main questions: are the techniques safe, ethical, and is there broad public support for changing the law. When the techniques were developed at the beginning of the millennium, and when the debates started to gain momentum more than ten years later, both the disease (maternally inherited mitochondrial disease ) and the technologies (mitochondrial donation ) were little known. By the end of the debates , mitochondrial donation had become one the most scrutinised reproductive techniques in recent UK history.
Genetic technologies, particularly reproductive technologies, have attracted extensive social science interest because of their potential to affect personhood (Novas and Rose 2000), transform kinship relations (Franklin 2013) and shape the politics of life itself (Rose 2007). Over the last ten years an extensive social science literature on mitochondrial donation has developed, recognising its transformative potential, continuities and discontinuities with previous technologies, and the new challenges it poses to current legal and ethical frameworks. Much of this literature is rooted in bioethics , theoretically and philosophically driven, and addressing broad and varied issues. These include biological accuracy of the âthree parent baby â label (Baylis 2013; Cohen and Alikani 2013); implications for the identity of the child (Bredenoord et al. 2011; Scully 2017); distinctions between treatment and reproductive intervention (Rulli 2016); ethical differences between the two main technical variants of the technique (PNT and MST) (GĂłmez-Tatay et al. 2017; Palacios-GonzĂĄlez 2017); whether the technologies constitute germ line modification (Newson and Wrigley 2017); the value of selecting male-only embryos (Appleby 2015; Bredenoord et al. 2011); and priority setting and resource allocation (Baylis 2017). Other issues addressed include international variation (GĂłmez-Tatay et al. 2017; Ishii 2017; VarvaĹĄtian 2015); and differing professional and religious perspectives (Bleich 2015; Bredenoord et al. 2010; Hens et al. 2015). More empirically based social science commentary on recent debates is also emerging including focus on the complexities of reproductive decision making (Herbrand 2017); hope and hype (Herbrand and Dimond 2017); vulnerability and invisibility of egg donors (Haimes and Taylor 2017); social meanings of genetic material (Turkmendag 2018); and the immutable grammar of âthree x xâ (Dimond and Stephens 2017).
Despite this richness of social science attention, this book delivers a distinct and novel addition to the literature, primarily through three related contributions. Firstly, as detailed in the âdata collection and analysisâ section, we present a unique empirical dataset including interviews with twenty stakeholders engaged in the policy debates from multiple perspectives, detailing their reflections on the policy process. Secondly, our analytical focus is somewhat distinct from most contemporary social science work in the area given that we are not seeking to evaluate the risks and benefits of mitochondrial donation nor attempt to contribute to the philosophical implications of its use. Instead, we provide an account rooted in sociology and Science and Technology Studies (STS) of the mitochondrial donation debates as a culturally situated set of interactions. We seek to understand how these debates made mitochondrial donation knowable, desirable, ethical , and sanctionable, through assertions of meaning, multiple labours, and diverse forms of alignment and boundary-work . Such labours were conducted through, and contributed to, the UKâs distinct biomedical political history and its relationships of political power. Thirdly, this bookâs novelty is also found in the analytical and theoretical account it develops, in the microanalysis of specific elements of the debates, and in our key conceptual contribution, the notion of enacting ethical futures , introduced in the closing of this chapter.
Mitochondrial Disease and Mitochondrial Donation
Mitochondria are small structures contained in the cytoplasm of a cell. They produce energy which is essential for cell performance, and each cell can contain hundreds to thousands of mitochondria, depending on the energy requirements of that tissue. Although...