Table 3 How the knowledge of individual carrier status is perceived to impact a participant’s life determines preferences for disclosure.
How knowledge of the individual carrier status is perceived to impact participant’s life | ||||
Type of variant | Variant that does not cause a disease | Knowledge allows awareness | Knowledge is - Irrelevant - Unnecessary burden | |
Variant that causes a disease | Knowledge allows - Possible action (prevention and/or treatment) - Coping | Knowledge allows action (prevention and/or treatment) | Knowledge is a burden | |
↓ | ↓ | ↓ | ||
Participant preference for disclosure of carrier status | Disclosure | Conditional disclosure | No disclosure | |
