title: Why Do Parents Want to Know their Child's Carrier Status? A Qualitative Study.
abstract: 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.
authors.affiliation: Centre for Health Equity, Melbourne School of Population and Global Health, University of Melbourne, Parkville, Australia. danya.vears@kuleuven.be.|Center for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Kapucijnenvoer 35, 3000, Leuven, Belgium. danya.vears@kuleuven.be.|Murdoch Childrens Research Institute, Parkville, Australia. danya.vears@kuleuven.be.|Children's Bioethics Centre, Royal Children's Hospital, Parkville, Australia. danya.vears@kuleuven.be.
authors.forename: Danya F
authors.initials: DF
authors.lastname: Vears
authors.affiliation: Children's Bioethics Centre, Royal Children's Hospital, Parkville, Australia.|Department of Medical Education, Melbourne Medical School, University of Melbourne, Parkville, Australia.
authors.forename: Clare
authors.initials: C
authors.lastname: Delany
authors.affiliation: Murdoch Childrens Research Institute, Parkville, Australia.|Children's Bioethics Centre, Royal Children's Hospital, Parkville, Australia.|Department of Respiratory Medicine, Royal Children's Hospital, Parkville, Australia.|Department of Paediatrics, University of Melbourne, Parkville, Australia.
authors.forename: John
authors.initials: J
authors.lastname: Massie
authors.affiliation: Centre for Health Equity, Melbourne School of Population and Global Health, University of Melbourne, Parkville, Australia.|Children's Bioethics Centre, Royal Children's Hospital, Parkville, Australia.
authors.forename: Lynn
authors.initials: L
authors.lastname: Gillam
mesh_terms: D000223:Adaptation, Psychological; D003550:Cystic Fibrosis / Q000235:genetics*; D005260:Female; D005817:Genetic Counseling; D006579:Heterozygote; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D011795:Surveys and Questionnaires
keywords: Carrier testing; Children; Communication; Coping; Genetic testing; Information-seeking; Parenting