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

Abstract

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.

Keywords:

• Risk
• hereditary cancer
• Lynch syndrome
• surveillance
• chronicity
• Denmark

Acknowledgements

The authors would like to thank all of the families who took the time to speak with us about their experiences of living with Lynch Syndrome. We would like to acknowledge and thank the European Research Council and The Danish Cancer Society. Finally, our appreciations to three anonymous referees whose excellent comments helped us sharpen the argument we make in the article.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Laura Louise Heinsen, [email protected]. ORCID: 0000-0001-9832-7869