In 1993, genetic testing became available to allow a person at risk to find out if they carry the faulty Huntington’s disease gene and therefore, if they will develop symptoms at some point in their life. The process is performed by extracting your DNA from a blood sample to identify whether you are carrying the faulty Huntingtin gene. However, the test for Huntington’s disease cannot determine when symptoms will begin or how severe symptoms are likely to be.

The testing process usually consists of genetic and psychosocial counselling, a neurological examination and a blood test. The time between the initial blood test and receiving your results is generally 6 to 8 weeks and testing is not usually done at the first genetic counselling appointment.

Genetic counselling is a supportive discussion-based process to help you consider all relevant factors before making an informed decision. If you are wanting to explore IVF/PGD family planning options, you can also raise this with the genetic counsellor in your first appointment. Other counselling support may be helpful to explore the outcomes and make sure you’re emotionally ready to make the decision.

According to international guidelines, if you are 18 years of age or older and have a blood relative who has been diagnosed with Huntington’s disease, you are eligible for the genetic test. If you are under 18 years of age and have questions about testing, please get advice from your local Huntington’s disease association. However, in most cases, genetic testing is not legally permitted for minors even with parental consent.