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Table 4 Examples of active non-disclosure reported by participants

From: Disclosure to genetic relatives without consent – Australian genetic professionals’ awareness of the health privacy law

ROLEEXPERIENCECONDITIONPROBANDREFUSED TO DISCLOSE TOREASON FOR NON-DISCLOSUREDISCLOSURE
Clinical Geneticist P4216+ yearsCarrier of a severe X-linked disease (female)ParentDaughterParent refusedRESOLVED – informed when pregnant.
Genetic counsellor (cert) P2911–15 yearsHereditary Creutzfeldt Jacob Disease (Fhx) gene mutation carrier (female)ParentChildrenUnable to disclose as did not want to cause concernUNRESOLVED
Genetic counsellor (cert) P222–5 yearsLynch syndromeParentChildrenWorry, guilt, anxiety for childrenUNRESOLVED via genetic counselling
Genetic counsellor (Associate) P256–10 yearsBalanced translocationFemaleAt-risk relativesDid not want to disclose child had a genetic condition, felt family would treat child differentlyRESOLVED via other relatives
Genetic counsellor (cert) P206–10 yearsMyotonic dystrophy (DM1)Adult maleRelativesIt was only his (proband’s) businessRESOLVED via other relatives
Genetic counsellor (cert) P126–10 yearsNot-specifiedFemaleCousinsThey wouldn’t care about meRESOLVED via ongoing genetic counselling
Genetic counsellor (Associate) P352–5 yearsCancer (male)MaleExtended Family membersDid not have a close and open relationship with extended familyRESOLVED via ongoing genetic counselling -wrote a family letter