Choices and Choosing in Cancer Genetics

Clinical genetics has established itself as a medical practice in which patients are addressed primarily as individuals who have to make informed choices (Bosk ; Steendam ). 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 ). 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 s onwards, new options for genetic testing on the basis of -diagnosis have been introduced and evaluated primarily as bringing along new opportunities of choice (Bourret et al. ). 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 ). 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