“They Just Want to Know” - Genetic Health Professionals' Beliefs About Why Parents Want to Know their Child's Carrier Status
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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 attributions that contrasted with reasons parents actually report. These disparities fall into two categories: 1) attributing reasons that parents do not themselves report (i.e. for reassurance about their child’s health), and 2) not recognizing the reasons that parents actually do report for wanting testing (i.e. to communicate the information to their child). By identifying that genetic health professionals may be misattributing reasons to parents for desiring their child”s carrier status, they may be missing an opportunity to assist parents to make decisions that are in line with their values and the best interests of the family.
KeywordsGenetic testing Carrier testing Children, parenting Gatekeeping Genetic counseling Communication Disclosure
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 Standards
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.
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 Committee at The University of Melbourne, Victoria, Australia (ID 1137204).
Informed consent was obtained from all participants for being included in the study.
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