The risk experience: the social effects of health screening and the emergence of a proto‐illness

Abstract

Those who undergo health screening often experience physical and emotional effects as a result of the screening process. However, the effects of health screening go beyond these physical and mental complications, often having profound social effects for those who are screened. This study explores the social implications of health screening for people who undergo it and are designated as being at risk for potential disease. Through a qualitative analysis of the experiences of individuals with elevated cholesterol levels and men with elevated prostate-specific antigen (PSA) levels, this research offers a description of the experience of being at risk, identifying three primary components: increased medical contact, a restructuring of everyday routines and altered social relationships. Whereas the at-risk health status engendered by current clinical approaches to screening and surveillance has been characterised as proto-disease, this study develops a companion definition of proto-illness to characterise the social experience of life with an identified health risk. Those who are at risk act in ways that are similar to those who are ill. The concept of proto-illness implies that the experience of risk is parallel to the experience of illness and contributes to the sociology of medical screening by establishing a much needed bridge between the two experiences.

At, with and beyond risk: expectations of living with the possibility of future dementia

“…Revised nosologies enable the identification of those considered most likely to develop symptoms in the future, primarily through the screening and measurement of the healthy population (Armstrong , Kreiner and Hunt ). Individuals identified thus, whether on the basis of blood pressure, blood glucose, cholesterol or genetic markers, enter a new health and social status, in which they are not ill, but may no longer be able to consider themselves as healthy (Gillespie , Scott et al . , Timmermans and Buchbinder ).…”

‘Well, I knew this already’ – explaining personal genetic risk information through narrative meaning‐making

“…Atkinson et al 2013, Gillian Chilibeck et al 2011) and the discussion on the liminal state experienced by people receiving genetic test results (e.g. Gillespie 2015, Konrad 2003, Timmermans and Buchbinder 2010.…”

Patients‐in‐waiting or chronically healthy individuals? People with elevated cholesterol talk about risk

“…Similarly, Gillespie () identified significantly altered circumstances and wide‐reaching adaptive responses among individuals obtaining an at‐risk status through routine cholesterol or PSA screening. According to him, the main social effects of this situation are increased medical contact (including medicine use), a restructuring of everyday routines (including lifestyle effects, e.g.…”

“…The experience of risk is thus incorporated into a larger category, encompassing presently asymptomatic individuals with varying levels and histories of medical contact. According to Gillespie (), the social experience of life with an identified health risk – in his case, elevated cholesterol or PSA‐levels – resembles the experience of proper (chronic) illness, thus justifying his notion of ‘proto‐illness’ (cf. Rosenberg ).…”