Accepted Paper:

Mitochondrial Disease Patient Activism: Feminist Technoscience Governance Research in Places of Rarity   

Author:

Jacquelyne Luce (Mount Holyoke College)

Paper short abstract:

Drawing on fieldwork in Germany and the transnational European sphere, this paper explores narratives of mitochondrial disease patient activism, everyday rare disease patient engagements with technoscience, and doing feminist technoscience governance studies in unexpected places.

Paper long abstract:

Mitochondrial disease is often classified as a rare neuromuscular or metabolic disorder, the symptoms of which are extremely varied in presentation and severity, ranging from severe multiple disabilities that are present from birth to adult onset progressive impairment. Mitochondrial disease is increasingly visible within the public sphere due to discussions about "mitochondrial donation", techniques involving the use of 'healthy' mitochondria from a donor egg in order to produce offspring which will (theoretically) be free of the mitochondrial DNA mutation of the intended parent. Mitochondrial donation is alternatively represented as an assisted reproductive technology, gene therapy, and/or a cure for mitochondrial DNA disease. Interrupting this focus on technoscientific novelty, this paper draws on fieldwork undertaken with mitochondrial disease patients and self-help group organizers in Germany, the US, Canada and the transnational European sphere since 2009 to address the contrastingly mundane narratives of mitochondrial disease patient activism, everyday engagements with technoscience and doing feminist technoscience governance studies in unexpected places. How are 'patients' and clinician-researchers negotiating the emergence and boundaries of a field called mitochondrial medicine? In what ways do repertoires of rare disease diagnostic technologies produce and disrupt ambitious imaginaries of health, science and social justice? How can feminist analyses of the 'participatory governance' of science and technology contribute to understandings of trust, silence, consensus, and coalitions within rare disease patient and researcher communities, especially in moments of achieving mainstream visibility?

Panel T100
Feminist Technoscience Studies in Unexpected Places: (Intra)Activism and Social Justice