Rebecca Dimond, PhD, Cardiff University
In this presentation I discuss the role of persuasion and representation in public and parliamentary debates about new reproductive technologies. In 2015 the UK became the first country to allow the clinical licensing of novel and controversial IVF techniques known as mitochondrial donation, enabling women with mitochondrial disease to have healthy, genetically related children. The techniques are controversial because they involve modification of the human germline, which means that genetic changes could be inherited by future generations. Legalisation was preceded by an extensive process of public consultations, parliamentary debates and scientific reviews which for some, established the UK as the ‘gold standard’ in regulation. Patients were allocated a critical role within the mitochondrial debates – as expert knowers, as victims and as future beneficiaries. Patient experiences were used as evidence of the clinical utility of the techniques, and suffering narratives became a powerful and dominant imaginary, with mitochondrial donation represented as a technological solution that would prevent children suffering and even eradicate mitochondrial disease from society. Those who fought against legalisation struggled to compete against such a dominant framing. With the debate now shifting in many countries to gene editing techniques, this presentation will consider what kinds of experience will be mobilised as evidence to support a technology which has much wider application than for one rare disease patient population.