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Lookup NU author(s): Dr Lorraine Cowley
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© 2020 by the author. This paper explores views of healthcare professionals (HCPs) in genetics and foetal medicine settings on offering pre-natal diagnosis (PND) for adult onset cancer susceptibility (AOCS) genes. Study participants came from different disciplinary backgrounds and all had considered implications of offering PND for AOCS, directly or indirectly, from professional and personal perspectives. Foetal medicine and genetics teams are accustomed to offering PND with the possibility of terminating an affected foetus on the basis of preventing severe physical or mental handicap to the child [1, 2]. In this qualitative study, participants were invited to semi-structured interviews. Using a narrative approach, participants had space to follow their thought processes. Narratives were thematically analysed. Whilst participants predominantly agreed that PND for AOCS does not fulfil Ground E for termination, they acknowledged difficulties in defining ‘severe’ taking into account patients’ experiences and perspectives in the reproductive decision-making process. Findings indicated that many participants felt uneasy about the prospect of offering PND for a condition which does not, in their view, conform to the types of conditions typically seen and accepted in this context. Inconsistencies emerged around what participants think ‘is’ offered and what reproductive choices ‘should’ be offered to patients in this context. We discuss coping strategies used by HCPs to reconcile personal and professional ethical challenges. Offering Pre-implantation Genetic Testing (PGT) for AOCS is conflated with offering PND by some participants and we discuss possible reasons for this. We also explore potential impacts of PND for AOCS on mainstreaming cancer genetics. Our research demonstrates healthcare professionals’ resilience in aiming to deliver compassionate care despite their personal and professional ethical conflicts. We argue that making policy about PND transparent and accessible will support professionals who feel conflicted about offering PND in new contexts such as AOCS genes.
Author(s): Cowley L, Jones M
Publication type: Article
Publication status: Published
Journal: OBM Genetics
Year: 2020
Volume: 4
Issue: 2
Online publication date: 26/04/2020
Acceptance date: 20/04/2020
Date deposited: 14/08/2023
ISSN (electronic): 2577-5790
Publisher: LIDSEN Publishing Inc.
URL: https://doi.org/10.21926/obm.genet.2002108
DOI: 10.21926/obm.genet.2002108
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