TY - JOUR

T1 - Surveillance life and the shaping of ‘genetically at risk’ chronicities in Denmark

AU - Heinsen, Laura Louise

AU - Wahlberg, Ayo

AU - Petersen, Helle Vendel

PY - 2022

Y1 - 2022

N2 - Today, in the field of hereditary colorectal cancer in Denmark, more than 40,000 identified healthy individuals with an increased risk of cancer are enrolled in a surveillance program aimed at preventing cancer from developing, with numbers still growing. What this group of healthy individuals has in common is lifelong regular interaction with a healthcare system that has traditionally been geared towards treating the acutely and chronically ill. In this article, we explore how people living with an inherited elevated risk of colorectal cancer orient themselves towards their families’ and their own predispositions as well as the lifelong surveillance trajectories that they have embarked upon – what we call surveillance life. Unlike prior critiques of predictive genetic testing as generative of ‘pre-patients’ or ‘pre-symptomatically ill’, we suggest that for those enrolled in lifelong surveillance programmes in welfare state Denmark, the relevance of risk fluctuates according to certain moments in life, e.g. at family reunions, when a close relative falls ill, in the time leading up to a surveillance colonoscopy or when enduring the procedures themselves. As such, rather than characterising surveillance life in terms of ‘living with chronic risk’ we show how ‘genetically at risk’ chronicities take shape as persons come to terms with a disease that possibly awaits them leading them to recalibrate familial bonds and responsibilities while leading lives punctuated by regular medical check-ups.

AB - Today, in the field of hereditary colorectal cancer in Denmark, more than 40,000 identified healthy individuals with an increased risk of cancer are enrolled in a surveillance program aimed at preventing cancer from developing, with numbers still growing. What this group of healthy individuals has in common is lifelong regular interaction with a healthcare system that has traditionally been geared towards treating the acutely and chronically ill. In this article, we explore how people living with an inherited elevated risk of colorectal cancer orient themselves towards their families’ and their own predispositions as well as the lifelong surveillance trajectories that they have embarked upon – what we call surveillance life. Unlike prior critiques of predictive genetic testing as generative of ‘pre-patients’ or ‘pre-symptomatically ill’, we suggest that for those enrolled in lifelong surveillance programmes in welfare state Denmark, the relevance of risk fluctuates according to certain moments in life, e.g. at family reunions, when a close relative falls ill, in the time leading up to a surveillance colonoscopy or when enduring the procedures themselves. As such, rather than characterising surveillance life in terms of ‘living with chronic risk’ we show how ‘genetically at risk’ chronicities take shape as persons come to terms with a disease that possibly awaits them leading them to recalibrate familial bonds and responsibilities while leading lives punctuated by regular medical check-ups.

KW - Faculty of Social Sciences

KW - Risk

KW - hereditary

KW - cancer

KW - Lynch syndrome

KW - surveillance

KW - chronicity

KW - Denmark

U2 - 10.1080/13648470.2021.1893654

DO - 10.1080/13648470.2021.1893654

M3 - Journal article

C2 - 34254842

VL - 29

SP - 29

EP - 44

JO - Anthropology & Medicine

JF - Anthropology & Medicine

SN - 1364-8470

IS - 1

ER -