Reproductive Decisions and Mitochondrial Disease

Abstract

Abstract Drawing on qualitative research exploring reproductive choices in the context of mitochondrial disorders, this chapter provides insights into the experiences and challenges of having a family and making these choices, insights currently missing from debates on mitochondrial donation and, more broadly, from social science literature. The chapter begins with the multilayered disruptions to their own biographies encountered by women finding themselves as at risk of transmitting mitochondrial disorders. It then explains how the characteristics of the disease make reproductive choices especially challenging. Five major difficulties faced by affected families are examined and illustrated via examples provided by participants. The third part describes how prospective parents showed a strong desire and persistent efforts to have healthy, biologically related children. The fourth part illustrates how, in this context, mitochondrial donation empowers women with respect to mitochondrial disease in the present, but for whom reproductive hopes were oriented toward a further future.