The hidden burden of medical testing: public views and experiences of COVID-19 testing as a social and ethical process

Abstract

Abstract Background In May 2020, the Scottish Government launched Test and Protect, a test, trace and isolate programme for COVID-19 that includes a PCR testing component. The programme’s success depended on the willingness of members of the public to seek out testing when they experienced symptoms and to comply with guidelines on isolation should they test positive. Drawing on qualitative interview-based research, this paper analyses public understandings, expectations, and experiences of COVID-19 testing during the early stages of the programme. Through anthropological and sociological analysis of the findings we aim to contribute to social understandings of COVID-19 testing practices; and to inform the design of population level testing programmes for future pandemics. Methods Between 7 July and 24 September 2020, 70 semi-structured interviews were conducted with members of the general public (aged 19–85) living in the Lothian region of Scotland. Interviews were held online or by telephone, were transcribed verbatim and analysed using thematic analysis informed by anthropological and sociological theories of medical testing. Findings Social relationships and ethical considerations shape testing practices at every stage of the testing process. Members of the public viewed testing as a civic duty to society and moral duty to friends, family, and colleagues. However, the testing process also placed a significant social, economic, and practical burden on the individual and sometimes generated competing obligations. Many participants experienced a disconnect between the government’s portrayal of testing as easy and the everyday burden of testing. Conclusions COVID-19 testing is experienced as a social process shaped by multiple relationships and ethical considerations. The full burden of testing should be considered in the design of future testing programmes.