Predictive testing for adult-onset neurological conditions such as Huntington Disease (HD), Amyotrophic lateral sclerosis (ALS) and other similar conditions, is available through our Neurology Genetics Program.
Pre-symptomatic testing indicates individuals who are at-risk for having the condition but do NOT have symptoms; they seek testing to learn whether they will develop the condition in their lifetime.
Testing is not recommended for everyone and is a significant, life-altering decision. For this reason, there is a pre-symptomatic protocol to complete prior to making the decision to test. Research shows that patients who decide to test after completing the protocol cope better with the information.
There are several reasons why a person may decide to undergo predictive testing. Some individuals may feel the certainty of knowing their status causes less anxiety. Others may choose to undergo predictive testing to aid in the planning of reproductive circumstances, finances, and life experiences. Each person’s decision is a very personal choice.
The predictive testing protocol involves meeting with various specialists including: a genetic counselor, neurologist, and therapists, etc. The protocol requires multiple visits (~3 or 4) and the genetic testing results are disclosed during an in-person appointment. The protocol was created by professional societies to ensure individuals make a well-informed decision and to protect their well-being.
While we understand that parents with these conditions are often worried about the future health and safety of their children, our program does not offer predictive testing to individuals under the age of 18. Once an individual reaches adulthood and can make an independent, informed decision, we can offer and discuss the predictive testing process. These recommendations are established nationally by multiple organizations.
Family planning is a common concern for individuals who are at-risk for these neurologic conditions, as the gene can be passed on to the child even if the person has not developed symptoms. This may be a reason an individual pursues predictive testing. Future parents can reduce the risk for their child to inherit the gene mutation through a process called in-vitro fertilization (IVF) with preimplantation genetic testing (PGT). This can be accomplished with or without the individual at risk undergoing predictive testing. If individuals do not want to know their own status, they can undergo the process of Non-Disclosure PGT.
