NEGOTIATING PKU:INSIGHTS FROM NEW ZEALAND

Abstract

This paper explores the experience for nine New Zealanders of living with Phenylketonuria (PKU). PKU is an inherited disorder of metabolism, detected by newborn screening and treated primarily through adherence to a strict and rather unpalatable diet which current medical opinion suggests should be lifelong. Our goal is to problematise this biomedical notion of 'adherence' to such a diet, and to do so by drawing on two areas of expert knowledge which are relatively unexplored in the medical literature - the views of people living with the condition and the social science literature on food and consumption. Both of these systems of knowledge provide useful contextual information to explore the complexity of adherence and move it beyond a simple notion of rational decision making. We suggest that biomedical 'problems' such as adherence are quite usefully addressed by hybrid research plans such as the one which underpins this project. However, conveying the resulting information back outwards into the biomedical sphere is rather more difficult for it implies the existence of a community of hybrid readers and a hybrid literature in which to place such work.