Emily Alderman ~ Genetic Counsellor
The first predictive test for an adult onset disease was done in 1986 at UBC for Huntington disease. Since then the lessons learned from Huntington disease predictive testing have been applied to many other genetic conditions. Predictive testing is now an established medical practice worldwide.Predictive testing at the Centre for HD provides individuals at risk for HD with the experience, dedication and resources of the CHD multidisciplinary team, previously recognized by HDSA as a top Centre of Excellence in HD care. Primary contact is with the genetic counsellor and the consultant geneticist. Access to support, additional medical care, and research is provided on an as-needed basis.
Emily Alderman, MS, CGC, CCGC
Predictive Testing is more than “a simple blood test”. It is a process whereby individuals can find out if they have inherited the gene for Huntington Disease (HD), which would predict developing HD in the future.
Anyone who is at risk for 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.
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 Predicitive Testing. Some of these are outlined in Genetic Testing for Huntington Disease, published by the Huntington Society of Canada (www.huntingtonsociety.ca) and available from 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 whether to pursue predictive testing.
You can find more information on HD predictive testing at a newly launched website (www.predictivetestingforhd.com). 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, as well as tools for healthcare providers assisting those considering testing.
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. This can 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.
It takes about six weeks from the first appointment to the fourth appointment. However, there is currently a 4 to 6 month wait list for Predictive Testing, so if you think you might be considering predictive testing then it is best to obtain a referral now. You can always change your mind later.
All information is strictly confidential and will not be released without written consent from the person being tested.
Emily Alderman is the genetic counsellor for the HD Predictive Testing Program for British Columbia and the Yukon. She can be reached at +1(604)875-2834. Please do not hesitate to call if you have questions or concerns you wish to discuss.
To learn more about predictive testing click here.