05. Confidentiality

How much information should you disclose to young patients and their parents?

Scenario

Julie Sandling, aged 45 is a long standing patient of yours. She asks to make an appointment for you to examine her children, Vicky aged 6 and Ben aged 14. Julie has Stargardt’s Macular Dystrophy, although her VAs are still good, at R and L 6/6. Julie tells you that the reason she wants her children examined is because she wants you to tell her whether her children have inherited Stargardt’s. However, she asks that if you do spot any changes you don’t tell the children that anything is wrong, and you also don’t tell the children that their mother has this hereditary condition, as she feels it may harm their relationship if her children feel that Julie has ‘caused’ their condition. Julie’s husband died 6 years ago and although he lost touch with his family many years earlier she remembers him saying that some of them also had problems with their eyes. 

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