Paper short abstract:

Mitochondrial disease is increasingly visible due to discussions of mitochondrial donation technologies. Based on fieldwork with mitochondrial disease patients and clinician-researchers, this paper explores mitochondrial medicine as a site of transnational scientific knowledge and patient mobility.

Paper long abstract:

Mitochondrial disease is becoming increasingly visible as a result of discussions surrounding emerging "mitochondrial donation" technologies. Mitochondrial donation is represented as an assisted reproduction technology by some, and as gene therapy by others. My research, involving fieldwork in the US and Germany, and narratives that are very much developed in relation to developments in the UK, is situated at a critical point of social and technological transformation. The UK, the US and Germany are very differently situated in relation to the global and transnational flows of knowledge, 'patients', and practitioners concerning emerging medical technologies. Regulations to permit mitochondrial donations in humans were introduced in the UK in March 2015. In February 2016, the National Academies of Sciences, Engineering, and Medicine endorsed the use of 'mitochondrial donation' on the condition that until further evidence is available only male embryos are transferred to the uterus of an intended parent. In Germany, a site of significant restrictions concerning reproductive technologies and embryo research, mitochondrial donation is, for my interviewees, not even foreseeable in any sense of the near future within the boundaries of the nation. How do we even think about the local contexts of governing medical technologies in an era of increasing medical and scientific mobility? In what ways does the development and regulation (permission or prohibition) of a technology, shape on-going research trajectories or influence patient understandings of mitochondrial disease and the transnational articulation of shared goals in support of developments in research and care?