Confidentiality

Confidentiality is a major issue particularly when different members of the same family seek genetic advice

• Consent from living affected relatives must be obtained prior to accessing any of their medical records
• Consent from the affected relative identified to have a gene mutation (or if deceased, their next of kin) should be obtained prior to use of their genetic information for DNA testing in relatives
• Written consent to proceed with a predictive genetic test should be obtained from the individual
• Predictive testing for genetic diseases is usually only offered to adults unless the disease in question has implications in childhood