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'We're kind of like genetic nomads' : parents' experiences of biographical disruption and uncertainty following in/conclusive results from newborn cystic fibrosis screening
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Boardman, Felicity K. and Clark, C. (2022) 'We're kind of like genetic nomads' : parents' experiences of biographical disruption and uncertainty following in/conclusive results from newborn cystic fibrosis screening. Social Science and Medicine, 301 . 114972. doi:10.1016/j.socscimed.2022.114972 ISSN 0277-9536.
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Official URL: https://doi.org/10.1016/j.socscimed.2022.114972
Abstract
As whole genome sequencing is being considered as a tool to deliver expanded newborn screening (NBS) globally, the range of equivocal results it could produce are gaining increased attention. For cystic fibrosis (CF) screening, the use of next generation sequencing within existing UK NBS programmes would increase the number of uncertain designations returned within results, including that of Cystic Fibrosis Screen Positive Inconclusive Diagnosis (CFSPID). However, the experiences of families already living with this designation have been under-explored. This study uses in-depth interviews to explore the perspectives of sixteen parents who received positive results from CF NBS, with varying degrees of prognostic un/certainty; parents with a child diagnosed with CF (n = 6), CF carrier status (n = 3) and those with the CFSPID designation (n = 7). The biographically disruptive nature of positive NBS results-regardless of immediate relevance to the child-dominated early experiences of positive results across all groups. For those with CF, biographical reparation involved becoming ‘a CF family’, underscoring biological kinship bonds and reinforcing familial identity. For those with uncertain results, biographical re-calibration was more complex. Diagnostic and prognostic uncertainty posed a barrier to entry for both the ‘CF world’ and the ‘healthy kid’ world, leading parents to attempt to minimise its role, either through rejection, or re-interpretation of their child's result. Other parents, however, experienced biographical reparation more dynamically. The concept of ‘genetic nomadism’ captures accounts of oscillation between the two worlds; movements that were responsive to evolving health experiences, as well as social, environmental and temporal factors. Through the concept of genetic nomadism, this paper delineates both the productive, as well as divisive, nature of uncertainty for biographical reparation in the aftermath of NBS, as well as the strategies parents use to harness it, in order to successfully navigate the world with a child with an ambiguous genetic future.
| Item Type: | Journal Article | ||||||||
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| Subjects: | R Medicine > RA Public aspects of medicine R Medicine > RC Internal medicine R Medicine > RJ Pediatrics |
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| Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School |
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| Library of Congress Subject Headings (LCSH): | Newborn screening , Cystic fibrosis , Cystic fibrosis -- Diagnosis , Cystic fibrosis in children | ||||||||
| Journal or Publication Title: | Social Science and Medicine | ||||||||
| Publisher: | Pergamon-Elsevier Science Ltd | ||||||||
| ISSN: | 0277-9536 | ||||||||
| Official Date: | May 2022 | ||||||||
| Dates: |
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| Volume: | 301 | ||||||||
| Article Number: | 114972 | ||||||||
| DOI: | 10.1016/j.socscimed.2022.114972 | ||||||||
| Status: | Peer Reviewed | ||||||||
| Publication Status: | Published | ||||||||
| Access rights to Published version: | Open Access (Creative Commons) | ||||||||
| Date of first compliant deposit: | 11 April 2022 | ||||||||
| Date of first compliant Open Access: | 4 May 2022 | ||||||||
| RIOXX Funder/Project Grant: |
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