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J Genet Couns. 2017 Feb 4. doi: 10.1007/s10897-017-0070-2. [Epub ahead of print]

"They Just Want to Know" - Genetic Health Professionals' Beliefs About Why Parents Want to Know their Child's Carrier Status.

Vears DF1,2,3, Delany C4,5, Massie J6,4,7,8, Gillam L9,4.

Author information

  • 1Center for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Kapucijnenvoer 35, 3000, Leuven, Belgium. danya.vears@kuleuven.be.
  • 2Centre for Health Equity, Melbourne School of Population and Global Health, University of Melbourne, Parkville, Australia. danya.vears@kuleuven.be.
  • 3Murdoch Childrens Research Institute, Parkville, Australia. danya.vears@kuleuven.be.
  • 4Children's Bioethics Centre, Royal Children's Hospital, Parkville, Australia.
  • 5Department of Medical Education, Melbourne Medical School, University of Melbourne, Parkville, Australia.
  • 6Murdoch Childrens Research Institute, Parkville, Australia.
  • 7Department of Respiratory Medicine, Royal Children's Hospital, Parkville, Australia.
  • 8Department of Paediatrics, University of Melbourne, Parkville, Australia.
  • 9Centre for Health Equity, Melbourne School of Population and Global Health, University of Melbourne, Parkville, Australia.

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:

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

PMID:
28161759
DOI:
10.1007/s10897-017-0070-2
[PubMed - as supplied by publisher]
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