Biological citizenship at the periphery: Parenting children with genetic disorders

Abstract

This paper engages critically with constructions of biological citizenship through analysis of the experiences of 10 New Zealand families with rare and currently incurable genetic disorders affiliated to the New Zealand Organisation for Rare Disorders (NZORD). While sharing elements in common with other health activist support groups (such as the forging of research collaborations between sufferers and scientists), NZORD activism is also influenced by New Zealand's situation on the periphery of genetic medicine. Group members demonstrate an endorsement of a modernist heroic vision of medicine in the public sphere allied with a subversive, simultaneous downgrading of medicine's status to mere technical services in the realm of the private sphere and within the medical clinic. The political goals for New Zealand's biological citizens are also shown to differ depending upon the possibility of treatment for various genetic conditions. This suggests that a range of new trajectories in the experience of "bottom up" genetic health activism is emerging in New Zealand. © 2008 Taylor & Francis.