“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
Original Research

Abstract

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.

Keywords

Genetic testing Carrier testing Children, parenting Gatekeeping Genetic counseling Communication Disclosure 

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Copyright information

© National Society of Genetic Counselors, Inc. 2017

Authors and Affiliations

  • Danya F. Vears
    • 1
    • 2
    • 3
  • Clare Delany
    • 4
    • 5
  • John Massie
    • 3
    • 4
    • 6
    • 7
  • Lynn Gillam
    • 2
    • 4
  1. 1.Center for Biomedical Ethics and Law, Department of Public Health and Primary CareKU LeuvenLeuvenBelgium
  2. 2.Centre for Health Equity, Melbourne School of Population and Global HealthUniversity of MelbourneParkvilleAustralia
  3. 3.Murdoch Childrens Research InstituteParkvilleAustralia
  4. 4.Children’s Bioethics CentreRoyal Children’s HospitalParkvilleAustralia
  5. 5.Department of Medical Education, Melbourne Medical SchoolUniversity of MelbourneParkvilleAustralia
  6. 6.Department of Respiratory MedicineRoyal Children’s HospitalParkvilleAustralia
  7. 7.Department of PaediatricsUniversity of MelbourneParkvilleAustralia

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