Why Do Parents Want to Know their Child’s Carrier Status? A Qualitative Study
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When a child is identified with a genetic condition, some parents want to know the carrier status of their other children. There has been little exploration of why parents want this information. To address this question, semi-structured interviews were conducted with parents of 32 children with cystic fibrosis, haemophilia, and Duchenne muscular dystrophy who wanted to know the carrier status of their other children. Data was analyzed using inductive content analysis. Parents expressed a range of reasons for desiring their child’s carrier status, which fell into two broad categories: 1) benefit for the parents and 2) perceived benefit to the child. Parents discussed the desire for certainty and peace of mind derived from having knowledge of their child’s status. The most commonly expressed reason for wanting to know their child’s carrier status was in order to communicate the information to their child to provide them with the ability to make informed reproductive decisions. These reasons suggest parents are seeking their children’s carrier information both as a coping strategy and to communicate carrier information as part of their role as a parent. This has important implications for genetic counseling practice, especially as international guidelines generally recommend against carrier testing in children.
KeywordsGenetic testing Carrier testing Children Parenting Information-seeking Coping Communication
Danya Vears acknowledges the support of the Brocher Foundation (Geneva, Switzerland), the Research Fund Flanders (Belgium) and the Ministère de l’Économie, de l’Innovation et des Exportations du Québec, PSR-SIIRI-850 (Canada).
Compliance with Ethical Statement
Danya Vears acknowledges the financial support of Research Fund Flanders (Belgium) and the Ministère de l’Économie, de l’Innovation et des Exportations du Québec, PSR-SIIRI-850 (Canada).
Conflict of Interest
Danya Vears, Clare Delany, John Massie and Lynn Gillam declare that they have no conflict of interest.
Human Studies and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). This study was approved by the Human Research Ethics Committees at The Royal Children’s Hospital, Victoria (ID 33040 A), The Hunter New England Local Health District, New South Wales (ID 13/08/21/5.12), and The Women’s and Children’s Hospital, South Australia (HREC/12/WCHN/114; SSA/13/WCHN 130). Informed consent was obtained from all patients for being included in the study.
No animal studies were carried out by the authors for this article.
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