Becoming in-formed: genetic counselling, ambiguity and choice

Abstract

The paper presents findings from an ethnography of dysmorphology, a specialism in genetic medicine, to explore genetic counselling as a process through which parents 'become informed.' Current professional and policy debate over the use of genetic technology in medicine emphasises the need for informed choice making, and for genetic services that provide parents with what is referred to as 'non-directive genetic counselling.' In the paper the process of becoming informed is shown to be very specific and to have its own effects. Specifically, genetics is performed in dysmorphology as a space of ambiguity and uncertainty. In addition, parents are engaged by the clinic as participants in the very processes through which their child, and perhaps their family, are clinically classified. The paper examines the effects of parents' immersion in this clinical space of deferral to suggest how the need for reproductive choice, and calculation, is predicated upon clinical processes that shift parents between the experience of definition and uncertainty. The paper thus troubles simple stories about autonomous and informed choice, particularly reproductive choice, as icons of contemporary versions of what it is to be fully human.