"They Just Want to Know" - Genetic Health Professionals' Beliefs About Why Parents Want to Know their Child's Carrier Status
Danya F Vears, Clare Delany, John Massie, Lynn Gillam
Journal of Genetic Counseling | SPRINGER | Published : 2017
In the context of a child being diagnosed with a genetic condition, reports from both parents and health professionals suggest many genetic health professionals are reluctant to provide carrier testing for unaffected siblings, despite the lack of evidence of harm. We propose that genetic health professionals' understandings of why parents want to have their children tested may contribute to their reluctance to test. We draw on interviews with 17 genetic health professionals, reporting their beliefs about parents' motivations for testing and their intentions to communicate results to their children. Data were analyzed using inductive content analysis. Genetic health professionals reported att..View full abstract
Awarded by Ministere de l'Economie, de l'Innovation et des Exportations du Quebec (Canada)
Danya Vears acknowledges the financial support of Research Fund Flanders (Belgium) and the Ministere de l'Economie, de l'Innovation et des Exportations du Quebec, PSR-SIIRI-850 (Canada).