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Professionals’ accounts of genetic testing in adoption: a qualitative study
  1. Michael Arribas-Ayllon1,
  2. Angus Clarke2,
  3. Katherine Shelton3
  1. 1 School of Social Sciences, Cardiff University, Cardiff, Wales, UK
  2. 2 Medical Genetics, University of Wales College of Medicine, Cardiff, UK
  3. 3 School of Psychology, Cardiff University, Cardiff, Wales, UK
  1. Correspondence to Dr Michael Arribas-Ayllon, School of Social Sciences, Cardiff University, Cardiff, Wales cf10 3wt, UK; arribas-ayllonm{at}cf.ac.uk

Abstract

Objective To explore social workers’ and medical advisors’ accounts of genetic testing in adoption.

Methods A qualitative study using semi-structured interviews to gather in-depth accounts of retrospective cases. Data were analysed thematically to identify professionals’ knowledge and expectations.

Results Twenty professionals working in adoption services (including 8 medical advisors and 12 social workers) participated in this study. Social workers adopted an essentialist (single-gene) model to discuss genetic testing in relation to past cases. They assumed that testing was a generic procedure for detecting the presence or absence of a specific aetiology, the results of which were believed to be definitive and mutually exclusive. By contrast, medical advisors were circumspect and agnostic about the meaning of results, especially in relation to chromosomal microarray testing. Whereas social workers believed that genetic testing provided clarity in assessment and therefore assisted adoption, medical advisors emphasised the uncertainties of testing and the possibility that prospective adopters might be misled. Medical advisors also reported inappropriate requests to test children where there was a family history of a genetic condition, or to confirm or exclude a diagnosis of fetal alcohol spectrum disorder in children presenting with non-specific dysmorphic features.

Conclusion Recent advances in genetic technologies are changing the ways in which professionals understand and tolerate uncertainty in adoption. Social workers and medical advisors have different understandings and expectations about the clinical utility of genetic testing. These findings have implications for social work training about genetic testing and enabling effective communication between professional groups.

  • children’s rights
  • comm child health
  • social work
  • genetics

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

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Footnotes

  • Contributors All the authors have made a material contribution to writing and drafting of the paper. However, MA-A made a substantial contribution towards writing, data analysis and conceptualisation. MA-A is also the grant holder of the project on which the paper is reporting.

  • Funding This work was supported by the Wellcome Trust grant number 205644/Z/16/Z.

  • Competing interests None declared.

  • Ethics approval This study was approved by School of Social Sciences Research Ethics Committee of Cardiff University (SREC/2229).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement The interview data collected for this study are only available to the collaborators of the project who are the three authors cited in this submission.

  • Correction notice This paper has been amended since it was published Online First. There were some incorrect table citations which have now been corrected.

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