Table 4 Examples of active non-disclosure reported by participants
ROLE | EXPERIENCE | CONDITION | PROBAND | REFUSED TO DISCLOSE TO | REASON FOR NON-DISCLOSURE | DISCLOSURE |
|---|---|---|---|---|---|---|
Clinical Geneticist P42 | 16+ years | Carrier of a severe X-linked disease (female) | Parent | Daughter | Parent refused | RESOLVED – informed when pregnant. |
Genetic counsellor (cert) P29 | 11–15 years | Hereditary Creutzfeldt Jacob Disease (Fhx) gene mutation carrier (female) | Parent | Children | Unable to disclose as did not want to cause concern | UNRESOLVED |
Genetic counsellor (cert) P22 | 2–5 years | Lynch syndrome | Parent | Children | Worry, guilt, anxiety for children | UNRESOLVED via genetic counselling |
Genetic counsellor (Associate) P25 | 6–10 years | Balanced translocation | Female | At-risk relatives | Did not want to disclose child had a genetic condition, felt family would treat child differently | RESOLVED via other relatives |
Genetic counsellor (cert) P20 | 6–10 years | Myotonic dystrophy (DM1) | Adult male | Relatives | It was only his (proband’s) business | RESOLVED via other relatives |
Genetic counsellor (cert) P12 | 6–10 years | Not-specified | Female | Cousins | They wouldn’t care about me | RESOLVED via ongoing genetic counselling |
Genetic counsellor (Associate) P35 | 2–5 years | Cancer (male) | Male | Extended Family members | Did not have a close and open relationship with extended family | RESOLVED via ongoing genetic counselling -wrote a family letter |