a. What are the costs of genetic testing? (monetary and psychological)

Genetic testing is not available free of charge in Sri Lanka and families have to pay for such investigations. The cost varies according to the test and some tests are not available locally.

The decision to have a test should be discussed with the clinical geneticist especially to decide if the test is essential or urgent for you. Some people want to have a test to have absolute certainty about themselves while other are more comfortable with uncertainly. The decision to have a test should be made carefully and after discussion, especially if it involves finding out if you are a carrier, have pre symptomatic testing for a disease that may develop later in your life or wish to make decisions regarding testing of a pregnancy.

In some cases having a genetic diagnosis will make a difference to how the patient is looked after and this is particularly true for disease that may occur in the next pregnancy. Some families may wish to have testing during pregnancy while others may opt to make different choices. In some cancer patients, genetic testing may help to decide if a particular treatment should be used.

b. Are there any other issues with genetic testing?

The clinical geneticist or laboratory will inform you about when the results should be available. Occasionally the laboratory will ask for a repeat sample or ask for other family members also to have testing performed. This may be to interpret a finding or due a technical error that occurred in the laboratory that could only be cleared with anew sample. You have a right to ask about the exact reason for the need for re testing of yourself or other family members.

Occasionally, genetic testing results may be difficult to interpret and the clinical geneticist and laboratory specialists will discuss this in detail with you and your other doctors.

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