The Huntington's Scene In  New Zealand

Site Maintained by
Graham Taylor

The Huntington Disease presymptomatic testing protocol (HDPT) adopted in 1994 by the Central Regional Genetic Services was based on international guidelines and included pretest psychiatric and neurological evaluations and genetic counselling. Several surveys from around the world have evaluated the short and long-term effects of HDPT and found that, altought the emotional impact of testing was significant, very few "catastrophic events" (e.g. suicide) have occurred as a result. In other words, after a period of adjustment, most people cope with testing and their results.

Predictive Testing in Canada

Alison Gray’s recent study which also evaluated levels of satisfaction with our protocol strongly suggested that people do not cope well with the lengthy waiting period between their initial meeting with our service and receiving their results. As a result of this feedback and to streamline the process our service has revised the steps involved in the protocol.

1. Discussion with the Medical Geneticist or Genetic Counsellor. Psychiatric help offered (optional). Contact numbers for the HD Association offered.

2. Written consent and blood sample obtained.

3. DNA extracted and the sample sent to the Auckland laboratory for testing.

4. Result session with Medical Geneticist, Genetic Counsellor, Psychiatrist or GP. If the result is ‘positive’ for the presence of the HD mutation a neurological evaluation will be offered.

5. Follow-up in person, by telephone or letter as appropriate.

It is hoped that the protocol will ensure people receive their results within three months of their meeting with a member of our service. Comments are very welcome.

Please address them to:-            

Wil Cambourn (Genetic Counsellor) Central Regional Genetic Services,

Wellington Hospital,

PO Box 7902,

Wellington South.