The Use of 'discursive Affects' As Uncertainty Management Strategy in the Context of Neurodevelopmental Disorder Genetics

Friday, 20 July 2018: 09:30
Oral Presentation
Jen MARSHALL, University of Toronto, Canada
In the genetic diagnostics of neurodevelopmental disorders (NDDs), uncertainties can be considered common. When answers to diagnostic questions are not forthcoming, ‘diagnostic odysseys’ describe a prolonged search for causal explanations for a child’s NDD. The lack of closure, due to uncertainty, is considered a significant source of anxiety for families and clinicians alike. However, these same diagnostic odysseys can be portrayed as uncertainty adventures with researchers, clinicians, and even patients and their families heroically searching for solutions to diagnostic problems.

This presentation will discuss the ‘discursive affects’ that experts in NDD genetics used to mange uncertainty in a context in which uncertainty is considered common. The data for this presentation are taken from 16 interviews with experts working in NDD genetics research and/or practice. These experts work in a field that is constantly changing, with regards to new genomic technologies (NGTs), patient populations, and disorders studied and diagnosed. These changes give rise to uncertainties around categories, criteria, and practices.

The discursive affects referred to in this presentation represent my interviewees’ affective responses to questions about uncertainty. Two specific, contradictory affects, ‘bravado’ and ‘hesitation,’ will be highlighted. Bravado reflected my interviewees’ approach to uncertainty as an adventure that was, according to my interviewees, faced fearlessly. They also spoke about their patients as partners in this uncertainty adventure. My interviewees’ hesitations around their work, specifically with regards to their lack of comprehensive understanding of NDDs and the goals of genomic testing, illustrated their doubts and reservations, which contrasted with their bravado. These discursive affects highlight ways in which my interviewees shaped and dealt with uncertainty and certainty in the above-mentioned clinical and research contexts.