Paper short abstract:

The diagnosis of the genetic condition MCADD creates genetically ‘disordered’ subjects, and infuses future reproductive hopes with fear. Already a space where medical technologies, reproduction, and the state collide, the mother’s body becomes a site of moral decision-making.

Paper long abstract:

Medium-chain Acyl-CoA dehydrogenase deficiency (MCADD) is an inherited metabolic disorder of fat breakdown that was added to the New Zealand newborn screening programme in 2006. Infections, fasting or vomiting can lead to serious illness with a risk of sudden death. In addition to creating genetically 'disordered', asymptomatic subjects, the diagnosis of MCADD infuses future reproductive hopes with fear and further medicalises subsequent pregnancies and births. This paper examines the experiences and decision-making of women and men in New Zealand as they navigate subsequent pregnancies (both with and without IVF) after the diagnosis of a child with MCADD. Within the neoliberal New Zealand healthcare system, the patient is privileged to manage her own disorder (or that of her children) as an autonomous, individual subject. However, the management of this disorder is carried out within a network of competing responsibilities. This paper argues that the asymptomatic, liminal nature of the disorder, which could at any time shift management of the disorder back to the state, plays a part in these parents wishing to pursue their reproductive dreams, despite the potential risks.