Genomic research and the cancer clinic: uncertainty and expectations in professional accounts

Abstract

This paper explores clinicians’ and scientists’ accounts of genomic research in cancer care and the complexities and challenges involved with delivering this work. Contributing to the sociology of (low) expectations, we draw on sociological studies of uncertainty in medicine to explore their accounts of working with uncertainty as part of the management of patient and institutional expectations. We consider their appeals to the importance of modest inquiry and framing of the uncertainties of genomic medicine as normal and at times welcome as they sought to configure professional autonomy and jurisdictions and cultivate an experimental ethos amongst their patients. We argue that these types of uncertainty work [Star, S. L. 1985. “Scientific Work and Uncertainty.” Social Studies of Science 15 (3): 391–427] are a key feature of managing expectations at the intersections of genomic research and clinical care.

Patient experience of uncertainty in cancer genomics: a systematic review

“…Existing uncertainty research has focused on patient uncertainty when undergoing single-gene testing (such as BRCA1/2 testing for specific hereditary cancer syndromes), 14 – 16 the uncertainty related to the science of genomics, or uncertainty experienced by health-care professionals in relation to interpreting results, and communicating uncertain information. 17 Little is known about the patient experience of uncertainty when undergoing cancer genomic testing, and the impact of this uncertainty on patient psychosocial outcomes. Furthermore, there has been no synthesis of the extant literature to aid identification of gaps and guide future research.…”

Beyond full jurisdiction: pathology and inter-professional relations in precision medicine

“…Löwy 1996; Kerr et al 2019)pathologists being above all doctors and not researchers (cf. infra)and/or as reactions in defence of a jurisdictional space threatened by genomic medicine and its promoters (Wilson-Kovacs and Hauskeller 2012; Hendriks, Simons, and Reinhart 2019; Kerr et al 2019). We maintain, however, that these explanations are unsatisfactory.…”

“…As is the case with innovation anywhere, the effective deployment of genomicsderived methods and techniques requires changes in practices, in professional relations and, more generally, in the local organization of healthcare services. Recent research has investigated the changes in the doctor-patient relationship and the difficulties inherent to these changes when implementing precision medicine in routine care (Kerr et al 2019). The profound changes in the division of labor among professionals in the production of routine genomic diagnostics are also beginning to be explored (Beaudevain, Peerbaye, and Bourgain 2019;Wright et al 2019).…”

Beyond nosology? Molecular tumor boards, singularization, and the conflation of diagnosis and therapy

“…Our analysis also partakes in a number of recent attempts to map the reconfiguration of clinical work as part of the deployment of precision oncology (see Kerr et al 2018 for a review). The experimental turn that characterizes this process is leading to a fading of the time-worn distinction between research and care (Crabu 2016;Cambrosio et al 2018;Green, Carusi, and Hoeyer 2019), while also cultivating an "experimental ethos" among patients (Kerr et al 2019). Our particular take on this issue is to focus on the platforms that practitioners have established as a condition of possibility for implementing innovative experimental interventions.…”