Predictive Testing for Huntington's Disease

What is Predictive Testing for Huntington Disease?

Predictive Testing is not "a simple blood test." It is a process whereby individuals can find out if they have inherited the gene for Huntington Disease from an affected relative.

Who can have Predictive Testing?

Anyone who is at risk for Huntington Disease (HD), and not showing any signs or symptoms of HD, may be eligible for Predictive Testing provided they are over the age of 18. Mostly, we see people whose mother or father has HD. A physician referral is required.

What is involved?

There is a considerable amount of education, counselling and support built into providing this type of information. The protocol at UBC involves four appointments. Prior to these appointments, information is taken over the phone and medical records may need to be obtained.

There are many issues to consider before embarking on Predictive Testing. Many of these are outlined in Genetic Testing for Huntington Disease, published by the Huntington Society of Canada. This information is also available at the Huntington Disease Resource Centre at +1 (604) 822-7195.

The genetic counsellor will discuss these and other issues with you over the course of the predictive testing. There is no commitment to completing the testing when a referral is made. In fact, some people may wish to meet with the program genetic counsellor outside of predictive testing to obtain information or to explore options available to them before deciding on whether to pursue predictive testing.

You can find more information on HD predictive testing at a newly launched website. This website contains more information for those considering predictive testing for HD in terms of the testing process, making the decision to be tested, interpreting results and coping with results. In addition, the website provides diagrams, expert videos and true stories of those who have considered, and undergone, predictive testing. We hope that this website will provide a valuable and reliable resource for those considering testing, as well as tools for healthcare providers assisting those considering testing.

Where is it done?

The appointments are all at the Department of Medical Genetics at the University of British Columbia. People who live outside the Lower Mainland may choose to enroll in an alternate protocol, though a minimum of one appointment in Vancouver is required. This may be discussed with the genetic counsellor (see "Who do I contact" below).

The actual DNA analysis is done in the Molecular Genetics Laboratory at the Children's and Women's Health Centre of BC.

How long does it take?

It takes about six weeks from the first appointment to the fourth appointment. However, there is currently a 7 to 9 month wait list for Predictive Testing. That is why if you are considering it, it is best to obtain a referral now.

What about confidentiality?

All information is strictly confidential and will not be released without written consent from the person being tested.

Who do I contact for further information?

Susan Creighton is the genetic counsellor for the HD Predictive Testing Program for British Columbia and the Yukon. She can be reached at +1 (604) 875-2000, extension 5439. Please do not hesitate to call if you have questions or concerns you wish to discuss.

To learn more about predictive testing, please visit