Making patients political: Narrating, curating, enacting, and navigating the 'idealised policy patient'.

In this article we develop the concept of the 'idealised policy patient' to contribute to a better understanding of patient-family activism and the mechanisms through which powerful and persuasive patient narratives are facilitated and mobilised. The context through which we explore the idealised policy patient is the UK debates about the legalisation of mitochondrial donation, which primarily took place between 2011 and 2015. In our example, the idealised policy patient was constructed around a culturally persuasive narrative of patient suffering, where mitochondrial donation was presented as a desirable and ethical solution. We draw on interviews with patient-families and stakeholders, and documentary analysis to identify four dimensions of the idealised policy patient - narrating, curating, enacting and navigating. Narrating describes how the idealised policy patient appears in public and policy spaces, as a culturally available narrative which conveys certain meanings and is designed to invoke an emotional and practical response. Curating identifies the multiple forms of labour and facilitation involved in supporting patient-families in activist activities which strengthen the dominant narrative and its embodiment. Enacting focuses on the work of patient-families themselves in supporting and contributing to the idealised policy patient in a way that enlivens and embodies the specifically curated narrative. Finally, navigating considers how those offering an opposing viewpoint position themselves in relation to the idealised policy patient. To conclude, we argue that medical sociology has often given insufficient scrutiny to how the capacity of patients to leverage their status for political ends is bolstered through alignment with existing powerful groups, particularly in hegemonic campaigns. We encourage future researchers to examine how the idealised policy patient is reproduced and reorientated within different policy contexts.

Silences, omissions and oversimplification? The UK debate on mitochondrial donation.

Drawing on scholarship from ignorance studies, this paper uses the case of the UK debates on mitochondrial donation (2012-2015) to emphasize the importance of deploying an analysis of ignorance that goes beyond medical and safety concerns when scrutinizing debates or campaigns around new reproductive technologies. In contrast to what happened with previous reproductive health treatments or drugs, the potential medical risks of mitochondrial donation were explicitly acknowledged and examined during its public and parliamentary discussions. However, I show, using the concepts of 'acknowledged unknowns' and 'ignored knowns', how the attention drawn to the medical risks contributed to obscuring the assessment of its economic and social impacts by silencing key knowledge regarding the limitations of mitochondrial donation in relation to the potential beneficiaries, the scope of the techniques, their alternatives and their costs. This article therefore calls for more systematic use of an integrated analytical framework of ignorance to be applied in the field of reproductive public policies, paying particular attention not only to the ways that medical risks are addressed, but also to the type of knowledge and disciplines this allows to silence or side-line in the framing and assessment of new biotechnologies.

Ideals, negotiations and gender roles in gay and lesbian co-parenting arrangements.

This paper engages with the complex gender and parental dynamics experienced in the context of co-parenting arrangements. These arrangements, based on mutual agreement, involve people who commit to raising a child together, possibly with their respective partners. These family forms are usually pursued to avoid what is perceived as the uncertainty surrounding alternative assisted reproductive options such as donor insemination or surrogacy, and to allow the child to have two biological and sexually differentiated parental figures. This paper explores some of the opportunities and challenges presented by co-parenting by focussing on the experiences and accounts of lesbian women and gay men engaged in such family arrangements. Drawing on work by social theorists of the family, the main characteristics of these arrangements are first examined to show that while co-parenting might first seem marginal, it appears particularly well adapted to contemporary social constraints and parenting expectations. The second part of the paper shows how in practice, dominant gender norms remain largely unquestioned and can lead to tensions and unbalanced parental power relationships between biological parents, which, in turn, can present a significant challenge to these family arrangements. The analysis therefore suggests that while co-parenting offers the potential for parents to reconcile contradictory social expectations and provide them with opportunities to create family practices that suit them, these are restrained by existing gender norms, in particular by the prevailing role of the biological mother.

Mitochondrial donation, patient engagement and narratives of hope.

This article develops the sociology of hope and patient engagement by exploring how patients' perceptions and actions are shaped by narratives of hope surrounding the clinical introduction of novel reproductive techniques. In 2015, after extensive public debates, the UK became the first country to legalise a mitochondrial donation technique aimed at preventing the transmission of inherited disorders. The article draws on the accounts of twenty-two women of reproductive age who are at risk of having a child with mitochondrial disease and would be the potential target of the technique. We explore the extent to which our participants engaged with the public debates and how they accounted for their support of mitochondrial donation. We show that while the majority of our participants were in favour of legalisation, they did not necessarily wish to use the technique themselves. We found that hope was multi-faceted, involving hope for self, hope for family and hope for society. We conclude by considering the implications of hope narratives for patients and families and the important but potentially limited role that patients can play as advocates for technology.

Mitochondrial Replacement Techniques: Who are the Potential Users and will they Benefit?

In February 2015 the UK became the first country to legalise high-profile mitochondrial replacement techniques (MRTs), which involve the creation of offspring using genetic material from three individuals. The aim of these new cell reconstruction techniques is to prevent the transmission of maternally inherited mitochondrial disorders to biological offspring. During the UK debates, MRTs were often positioned as a straightforward and unique solution for the 'eradication' of mitochondrial disorders, enabling hundreds of women to have a healthy, biologically-related child. However, many questions regarding future applications and potential users remain. Drawing on a current qualitative study on reproductive choices in the context of mitochondrial disorders, this article illustrates how the potential limitations of MRTs have been obscured in public debates by contrasting the claims made about the future beneficiaries with insights from families affected by mitochondrial disorders and medical experts. The analysis illuminates the complex choices with which families and individuals affected by mitochondrial disorders are faced, which have thus far remained invisible. An argument is presented for improved information for the public as well as an intensification of critical empirical research around the complex and specific needs of future beneficiaries of new reproductive biotechnologies.