Introduction

Clinical genetics has established itself as a medical practice in which patients are addressed primarily as individuals who have to make informed choices (Bosk 1992; Steendam 1996). Historically, centres for clinical genetics in the Netherlands have a privileged position in offering genetic counselling and genetic testing, and function as “gatekeepers” for those seeking genetic consultation and diagnosis (Nelis 2000). In these centres, genetic diagnosis is embedded in a practice of counselling in which facts deemed relevant are separated out as “information” that is handed out to clients along with a few courses of action formulated as possible alternatives and between which clients are requested to choose. The establishment of clinical genetics thus created a particular space for individual decision making in which, from the 1990s onwards, new options for genetic testing on the basis of DNE-diagnosis have been introduced and evaluated primarily as bringing along new opportunities of choice (Bourret et al. 1998).

In today's health care, this particular configuration – that of the individual patient called upon “to decide” – is held in high esteem. A good doctor leaves patients room for choice. But how can we understand the issue of individual choice when we simultaneously consider the rapidly developing practices of medical genetics from a perspective of co-production of technology and society? From this perspective, we are interested in the question of how technological objects and individual subjects – nonhuman and human agents – mutually shape one another in an emerging web of socio-technical relations (Berg and Mol 2001). Looking at recent developments in medical genetics in this way, we can make two observations. We see the emergence of increasingly complex networks, involving a growing interdependency between many different actors: technologies of screening, registries, medical specialists, patients, clinical genetics centres, and individuals at risk. At the same time, we see how in this network a particular model of human agency is endorsed, according to which it is the individual patient or person at risk who has to decide.

How should one weigh these observations? Should we interpret them as revealing a tension or even contrast between “structure” – embodied in networks and interdependencies – and “action” – embodied in individual freedom of choice?