Cultivating Genetic Sensibility in Danish Lynch Syndrome Families

When should we tell them? This question has become ever more salient for parents with young children, who have come to learn that they are carrying a cancer-predisposing germline mutation. In present-day Denmark, almost 500 families live with the knowledge of a genetic predisposition known as Lynch syndrome. Alongside this awareness comes the recognition that such a mutation may have been passed on to their children, and that cancer prevention now takes the form of lifelong surveillance. This chapter explores the manner of informing children that they may have inherited an elevated risk of colorectal cancer. Rather than seeking to identify a singular “right time” or model for disclosure, we argue that this question itself obscures the complexities of living with and communicating genetic risk. Drawing on an ethnographic study of families affected by Lynch syndrome, we present four “disclosure stories” that illustrate how parents navigate this terrain. We introduce the concept of genetic sensibility to capture the nuanced work parents engage in—“dosing”, filtering, and moderating genetic knowledge—in order to guide their children into a mode of awareness that is attuned to the practical and emotional realities of surveillance life, both in the present and in the future. In doing so, we move beyond existing frameworks of communicative models or styles, and instead expand on the concept of genetic responsibility. While early social studies of genetic counselling aptly described the ethical tensions surrounding disclosure during the emergence of genetic testing, the notion of genetic sensibility foregrounds how genetic knowledge has become part of the mundane fabric of social life for increasing numbers of families.