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Accepted Paper:

Uncertainty, actionability and prenatal genomic sequencing  
Adam Hedgecoe (Cardiff Unviersity)

Short abstract:

This paper presents ethnographic data on clinical decision making around prenatal testing employing next generation sequencing technologies. It highlights the flexible, socially contingent nature of decisions about the actionability of these results.

Long abstract:

Drawing on ethnographic observations in over 290 clinical team meetings and covering a range of conditions from inherited heart disease, cancer, developmental delays and dysmorphia, this paper seeks to explore professional decision making around clinical genomic sequencing. With a specific focus on decisions about a particular kind of ambiguous result – called Variants of Uncertain Significance (VUS) – this paper examines the role of the perceived ‘actionability’ of specific genomic results in prenatal testing. The key insight centres on the way in which clinicians’ beliefs about how parents will react to a result feed back into decisions about the status of such ambiguous results, builds on previous STS work around actionability from Nicole Nelson, Alberto Cambrosio and Stefan Timmermans.

Traditional Open Panel P309
Governing biomedical tests: towards social studies of bio-medical testing?
  Session 1 Friday 19 July, 2024, -