Searching for diagnostic certainty, governing risk: Patients' ambivalent experiences of medical testing

Abstract

Diagnosis is pivotal to medicine's epistemic system: it serves to explain individual symptoms, classify them into recognizable conditions and determine their prognosis and treatment. Medical tests, or investigative procedures for detecting and monitoring disease, play a central role in diagnosis. While testing promises diagnostic certainty or a definitive risk assessment, it often produces uncertainties and new questions which call for yet further tests. In short, testing, regardless of its specific application, is imbued with meaning and emotionally fraught. In this article, we explore individuals' ambivalent experiences of testing as they search for diagnostic certainty, and the anxieties and frustrations of those for whom it remains elusive. Combining insights from sociological work on ambivalence and the biopolitics of health, and drawing on qualitative interviews with Australian healthcare recipients who have undergone testing in the context of clinical practice, we argue that these experiences are explicable in light of the contradictory impulses and tensions associated with what we term ‘bio‐subjectification’. We consider the implications of our analysis in light of the development of new tests that produce ever finer delineations between healthy and diseased populations, concluding that their use will likely multiply uncertainties and heighten rather than lessen anxieties.

Why do people choose not to take part in screening? Qualitative interview study of atrial fibrillation screening nonparticipation

“…In this context, echoing concerns of other nonparticipants across screening programmes (e.g., Berg‐Beckhoff et al; Maclean et al), 54,55 engaging in screening risked ‘making’ AF and opening Pandora's box of ‘trouble’. This was not irrational: testing for a condition they did not think they had (but that they recognised could be identified by screening) would create unhelpful awareness of problems in their body and disrupt their health 56 . Moreover, their acceptance that they would die ‘when their time has come’ as Davison et al 57 found (and since found in screening 50 ), exposed the mirage of screening and preventative health practice in halting death 58 .…”

“…This was not irrational: testing for a condition they did not think they had (but that they recognised could be identified by screening) would create unhelpful awareness of problems in their body and disrupt their health. 56 Moreover, their acceptance that they would die ‘when their time has come’ as Davison et al 57 found (and since found in screening 50 ), exposed the mirage of screening and preventative health practice in halting death. 58 Together these factors rebalanced perspectives to place more weight on the effort of participating against the benefit of addressing future ill health.…”

Constructing the detecting stage: Social processes and the diagnostic journey of early onset Parkinson’s disease

“…Indeed, when diagnosed with a chronic or fatal illness, individuals experience BD as Liamputtong and Suwankhong (2015) suggest. However, in this context, individuals experience diagnosis as relief and redemption, as Bury also suggests (on diagnosis as relief see also Pienaar & Petersen, 2021). 2 For some researchers, BD is perceived as a vertical line that separates life in two (before and after the onset of a disease), and for some others such as Valasaki (2022), BD is a repetitive process experienced, every time new symptoms appear.…”

Dealing with ambivalence in the practice of advanced genetic healthcare: towards an ethical choreography

“…Conflicting expectations and interests in these healthcare practices can fuel tension and ambivalence on both an individual (patient and/or professional) and structural (in practices and/or guidelines) level. Literature on ambivalence in healthcare has pointed towards those experiences of patients and involved healthcare professionals, in relation to ethical dilemmas as well as to specific health technologies and diagnoses (17)(18)(19)(20)(21)(22). Work on ambivalence in research contexts, including genetic research, has showed how scientific 'norms' can be oppositional, situated and fluid in nature and how this ambivalence is pivotal in science-making and understanding knowledge transformations (23)(24)(25)(26)(27).…”