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.

 

For Information:

Emily Alderman, MS, CGC, CCGC

Genetic Counsellor

chdclinics@cmmt.ubc.ca

+1(604)875-2834

For Referrals:

Sandy Hazan

Clinical Secretary, Centre for Huntington Disease

chdclinics@cmmt.ubc.ca

+1(604)822.7366

Frequently Asked Questions

 

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 genetic test result. The protocol at UBC involves four appointments. Prior to these appointments, medical and family history information is collected using questionnaires.

There are many issues to consider before embarking on Predictive Testing many of which are outlined in the following resources:

  1. Genetic Testing for Huntington Disease, published by the Huntington Society of Canada available here (Genetics of HD worksheet)  and  from the Huntington Disease Resource Centre at +1 (604) 822-7195.
  2. HD Society of Canada's booklet on predictive testing perspectives: You can download the booklet here.
  3. HD Youth Organization: Youth info available here

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

Currently appointments are all done by videoconference (using Zoom). In person appointments at the Centre for Brain Health at UBC in Vancouver are also an option for those who prefer meeting face-to-face. The actual DNA analysis is done in the Molecular Genomics Laboratory at BC Children’s Hospital.

It takes about eight weeks from the first appointment to the fourth appointment.

All information is strictly confidential and will not be released without 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 (604) 875-2834 or at emily.alderman@cw.bc.ca. Please do not hesitate to call or email if you have questions or concerns you wish to discuss.