Demand for predictive genetic testing for Huntington's disease in Australia, 1987 to 1993

Abstract

Objective: To assess the demand for genetic testing for Huntington's disease among at-risk individuals and for prenatal testing among parents at risk of transmitting the disease, from January 1987 to March 1993.

Methods: Questionnaires were sent to all State coordinators of genetic testing services.

Results: One hundred and ninety adults (5.5% of those at risk) and 56 fetuses were tested. Nine per cent more women than men used the service. Most people tested were married and had offspring. Men generally presented for testing at an older age than women.

Conclusion: The low uptake for testing is not surprising given the severity and untreatability of the illness. Careful monitoring is required, particularly of the effects on individuals told of their genetic status and of possible abuse of the information by third parties.