Professionals' accounts of genetic testing in adoption: a qualitative study release_uzsi6s5sx5fohdnjtz4w5q2uwu

by Michael Arribas-Ayllon, Angus Clarke, Katherine Shelton

Published in Archives of Disease in Childhood by BMJ.

2019   Volume 105, Issue 1, archdischild-2019-316911

Abstract

<jats:sec><jats:title>Objective</jats:title>To explore social workers' and medical advisors' accounts of genetic testing in adoption.</jats:sec><jats:sec><jats:title>Methods</jats:title>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.</jats:sec><jats:sec><jats:title>Results</jats:title>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.</jats:sec><jats:sec><jats:title>Conclusion</jats:title>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.</jats:sec>
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