Whether to have genetic testing for Huntington's disease can be a difficult decision.
Our Huntington's disease experts can help. Rush University Medical Center is a Huntington's Disease Society of America (HDSA) Center of Excellence. We follow the HDSA's recommended genetic testing process.
This process allows you to do the following:
- Gather all relevant information
- Learning about Huntington's from experts in the field
- Reflect on any emotional or social concerns you may not have thought through yet
Types of Genetic Testing for Huntington's
Genetic testing for Huntington's disease (both pre-symptomatic and confirmatory testing) takes place at our downtown Chicago location.
- Confirmatory testing: Genetic testing for Huntington's disease can confirm a diagnosis in a person who is already showing symptoms.
- Pre-symptomatic testing or predictive testing: Some people prefer to be tested before they have symptoms to predict if they will develop Huntington's in the future.
- Predictive testing can only tell you if you have the expanded gene that causes Huntington's to develop.
- It cannot tell you what symptoms you will have or at what age you may start to show symptoms.
Huntington's Genetic Testing Factors to Consider
The genetic testing process is not as simple as having your blood drawn and then receiving your results. There are many other factors to consider, including the following:
- Your emotional state
- Financial constraints
- Insurance concerns
- Future planning, including family planning
- Social issues involving other at-risk or diagnosed family members
Huntington's Genetic Testing Process at Rush
We understand that you may have been considering genetic testing for years. And when you are finally ready, you want to have your test as soon as possible.
- We have a dedicated scheduler who will work with you to get you seen as soon as possible, but it is best to plan ahead.
- It takes four weeks to get the results back, so the testing process will last more than a month at a minimum.
- We take this process very seriously. Every team member is here to help you along the way, answer questions and work with you to make the process as easy as possible.
If you are currently experiencing symptoms of Huntington's, we will schedule an initial evaluation for you at our downtown Chicago Huntington's Disease Care location.
During that visit, you may have the following:
- Neurological examination
- Blood test to confirm diagnosis
- Option to meet with a genetic counselor, our neuropsychiatrist, a nurse or a social worker, depending on your concerns
- Discussion about your potential diagnosis
- Creation of a plan of care for you moving forward
- We do not perform prenatal testing directly; however, we can connect you to the appropriate resources if you are already pregnant.
- Our genetic counselor can help you understand the different testing options and refer you to an OB-GYN at Rush with experience in prenatal testing.
Pre-Symptomatic Testing (Predictive Testing)
If you are not experiencing symptoms of Huntington's but are at-risk for the disease, we can schedule you for our genetic testing process at Rush University Medical Center.
Note: Predictive testing requires an initial telephone consultation, followed by at least two in-person visits.
- The telephone consultation gives you a chance to ask questions about the testing process and talk to our nurse about considerations for insurance, privacy and payment options.
- Many people choose to pay out-of-pocket for predictive testing rather than bill their health insurance. We will also discuss testing costs during this conversation.
- After we answer your questions are explain the process to you, you will have time to think about if this is the right step for you.
- If you decide to proceed, our team will help coordinate a time for an appointment.
- At your initial visit, you will meet with the neurology team, which includes the following members:
- Neurologist or physician assistant (PA)
- Social worker
- Genetic counselor
- Our social worker or neuropsychiatrist will talk to you about your mood, daily activities, support system and plans for the future.
- The neurologist or PA may perform a physical exam.
- Our genetic counselor will talk to you about your family history, and the different possibilities for genetic test results and what they mean.
- Occasionally, we may recommend that you get additional care before having your blood drawn. For example, we may ask that you attend counseling or address another medical concern first. If this occurs, we will not draw your blood during your initial visit, and our team will help to develop a plan with you.
- Before you leave, we will set up an appointment in about four weeks for you to receive your test results in person.
- If you decide to pay out of pocket, you will have your blood drawn in our office at the end of the visit. Our genetic counselor will personally deliver it to the genetic laboratory for analysis.
- If you decide to use your insurance to pay for the appointment, you will be given an order for the blood test at the end of your visit. You will go to the fourth floor Professional Building laboratory to have your blood drawn.
Genetic Testing Results Appointment
- Results take one month to come in.
- Whether you had pre-symptomatic testing or were confirming a diagnosis, we always deliver the results to you in person at our downtown Chicago location.
- We strongly encourage you to bring a friend or not-at-risk relative to support you during this visit.
- You typically meet with the neurologist or physician assistant, social worker and neuropsychiatrist at this visit. This is our standard practice. Having more providers at your results visit does not reflect anything about the results themselves.
Can I Skip the Genetic Testing Process and Just Get My Results?
Sometimes patients ask us if they can just have their blood drawn and skip the rest of the process. In short, our answer is no.
- Although we want to accommodate our patients' requests, we feel it is important to follow the genetic testing guidelines set by the HDSA.
- The process allows you to gather information from different specialists (neurologist, genetic counselor, etc.) and make a truly informed decision. The decision to move forward with genetic testing can be an emotional process, and having a team that you get to know is beneficial to help you through this time.
- Our goal is that this process will help you feel supported and encouraged throughout your genetic testing journey.
- We generally discourage getting just the blood test with a provider who does not treat or specialize in Huntington's. There are reports of test results being misinterpreted when collected through less experienced sources, such as a family practice clinic.
Genetic Testing Costs
- The out-of-pocket cost of pre-symptomatic genetic testing includes the following:
- Visits with the neurologist or physician assistant, neuropsychiatrist, genetic counselor and social worker
- Blood test
- Results visit four weeks later
- Costs will be discussed during your initial phone consultation.
- We realize for some people, cost can be a barrier to care. Our team is dedicated to work with you to develop a plan that is cost-effective for you without limiting your access to the appropriate care.
- If you decide to use your health insurance to cover the costs of pre-symptomatic testing, they (and any future insurance carriers) would have access to your testing information.
- If you would like to maintain control of who has access to your genetic results, we recommend paying out of pocket.
Genetic Testing and Discrimination
If you are considering pre-symptomatic testing, we recommend you secure disability, long-term care and life insurance before the test, if possible.
- The Genetic Information Non-discrimination Act (GINA) is intended to protect against discrimination based on your genetic results. However, it applies only to health insurance and employment.
- GINA does not protect against discrimination based on your genetic results for disability, long-term care or life insurance.
- GINA does not apply once a person shows signs and symptoms of Huntington's disease.
Genetic Testing Confidentiality
We take confidentiality extremely seriously when dealing with genetic information. Our team will work with you to maintain your privacy.
- Although we cannot guarantee electronic security, our team and Rush University Medical Center have protocols in place to minimize any risks of security breeches. For example, genetic test results are kept in paper form, in a secure office, and not in the electronic medical records.
- To talk to somebody from our team or to schedule a genetic testing appointment, please call our HDSA Center of Excellence at (312) 563-2900. Then select option 2 and option 2 again and leave a message on our confidential voicemail.
- Please provide the best phone number where we can reach you.