Here’s how it works:
Fill out HD Genetics’ intake questionnaire ~10-15 minutes and we’ll give you a call to confirm your interest, answer any questions and set up your first appointment with our licensed genetic counselor at no-cost.
Saliva Kit Collection
If you decide to move forward you’ll be mailed a saliva kit to provide a DNA sample for our partner laboratory to run. This ships to whatever address you provide and comes with a pre-paid return shipping label
Regardless of your genetic result, HD Genetics wants to make sure you have all the needed resources and support. We hope to connect you with the best clinical care, trials, and advocacy resources to fit your needs.
Counseling Visit #1
Meet virtually with our licensed genetic counseling team to ask any questions you have about the testing process and confirm you’d like to move ahead with testing. You will only pay if you decide to move forward with testing
Genetic Counseling Visit #2 (Test Results Disclosure)
Meet again with our licensed genetic counseling team who will share your genetic test results. Our team will answer any of your questions and provide info to help you understand what your results mean for you and your future
Who is HD Genetics?
We are a small privately funded company specifically dedicated to helping people impacted by Huntington’s disease (HD). We combined our personal HD connections and professional experience to provide a new option for individuals who are at-risk for HD and looking to undergo genetic testing and counseling. Learn more about our team, here.
What does HD Genetics offer?
Our main service is genetic counseling and testing for individuals in the U.S.A. who are at-risk for HD. We also offer genetic counseling for individuals who have already had HD genetic testing and are looking to connect with an HD specialist to discuss the implications of their test results.
Beyond our genetic counseling and testing services, our goal is to make sure that each individual has the knowledge and resources to best navigate their HD journey. Whether that’s getting connected to an advocacy organization, finding HD-specialized care or figuring out if you might qualify for a clinical trial, the HD Genetics team is here to help you.
How much does it cost?
Our main genetic counseling and testing service for at-risk individuals costs $500. The initial 1-hour genetic counseling session is free. Individuals are only charged if they decide to move forward with testing.
For individuals who have already had genetic testing and are looking to speak with us to learn more about what their results mean, we charge $150 per 1-hour genetic counseling session.
The HD Genetics team is committed to making sure everyone is able to get services regardless of their ability to pay. If you think you might need financial support, please reach out to our team.
What is included in the cost?
The $500 fee includes the cost of the genetic test with HD Genetics’ partner laboratory and all of our genetic counseling sessions. There are no other costs.
Can I use my health insurance?
We do not directly bill your insurance for any of our services. We only accept payment via debit/credit cards, money order or HSA/FSA debit cards. If you have another form of payment you’d prefer, please ask the HD Genetics team.
If you’d like to submit your receipt to your insurance provided after your receipt, HD Genetics can provide some guidance. Each insurance provider will vary on whether or not our services are reimbursable.
Can I remain anonymous?
Some individuals wish to remain anonymous through their HD genetic testing journey. We’ve put in a few options that will allow those individuals to remain anonymous throughout the process.
If this is very important to you, please make sure to bring up your questions with the HD Genetics’ team during your first intake phone call or session with our genetic counselor.
Who is the HD Genetics counselor?
Wes Solem is a Certified Genetic Counselor (CGC) through the American Board of Genetic Counseling. He earned a Master of Science in Genetic Counseling from Johns Hopkins University in 2021. As part of this program, Wes was an Intramural Research Trainee for the National Human Genome Research Institute (NHGRI) and National Cancer Institute (NCI) at the National Institutes of Health (NIH). His graduate thesis research was titled “COVID-19 Impact on Genetic Counseling for Huntington’s Disease via Teleheath”. Prior to graduate studies, Wes worked as an undergraduate laboratory assistant for Dr. Jeff Carroll at Western Washington University, studying the neurobiology and behavior of mice modeling Huntington’s disease. In 2018, Wes was selected for HDSA’s Donald A King Research Fellowship and in 2019 earned a Bachelor of Science in Behavioral Neuroscience.
Wes runs all of HD Genetics’ counseling sessions and will be the main point of contact throughout the genetic testing and counseling experience. You can reach out to Wes anytime with questions: Wes@HDgenetics.com
Where are your services available?
As of November 15, 2022, we are OPEN to service individuals who are in these states: Alabama, Arizona, Arkansas, California, Colorado, Connecticut, Delaware Florida, Georgia, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Montana, Nevada, New Jersey, New York, North Carolina, Oklahoma, Pennsylvania, South Carolina, Texas, Virginia, Washington, West Virginia & Wisconsin.
By the end of 2022 we hope to have services available in all 50 states and the list above will be updated periodically.
We do not have any short-term plans to expand outside of the USA.
How long does it take to get results?
If after the initial counseling session with the HD Genetics team it’s decided that the individual will move forward with testing, a saliva collection kit will arrive at the individual’s mailing address in 3-5 business days, along with a pre-paid return shipment envelope. After the individual ships their sample back to the laboratory, it will take between 2-3 weeks for HD Genetics to get the results.
HD Genetics will work with each individual to schedule their results appointment after they’ve confirmed they’ve sent in their sample.
What is HD Genetics’ clinical protocol?
HD Genetics has a rigorous protocol, created and vetted by many HD and genetic experts. The gold standard in HD genetic counseling is the HDSA Genetic Testing and Counseling protocol created in 2016. We used this HDSA protocol as a baseline and have created a very similar process that keeps the individual’s needs at the forefront of every decision.
If you’d like a copy of our protocol, please reach out to GC@HDgenetics.com
How do you store my information?
HD Genetics takes the storage & security of your health & contact information very seriously. Technology systems used by HD Genetics and our partner laboratory to collect and store your data are all HIPAA-compliant.
Do you share my information with anyone?
We must share your information with our partner laboratory and in some states with an partnering physician if you choose to undergo genetic testing. Please know that we allow you to use a pseudonym (for anonymous testing) if you’d like.
Certain states allow genetic counselors to order the laboratory test, and some states require a physician’s signature. If you do not have a personal physician you’d like to use, we have our own network of physicians who can help.
We believe that some of the information you provide us can help accelerate our understanding of HD and clinical trial preparation. Unless you opt-out of participation, we may share your de-identified information with HD stakeholders who may be interested in using individuals’ information to develop treatments for HD or gain a better understanding of the community. We will never share your name, contact info, address or other information that could be used to identify you, unless we are required to do so by law.
Do you provide any other services outside genetic testing and counseling?
Right now HD Genetics only offers genetic testing and counseling.
If you’ve already undergone genetic testing and you’d like to speak with our genetics team about your results, we do offer 1-hour consultations for $150 per hour. Please reach out if you are interested, GC@HDgenetics.com.
What if I’ve already tested for HD, can I still use your services?
If you’ve already undergone genetic testing and you’d like to speak with our genetics team about your results, we do offer 1-hour consultations for $150 per hour. Please reach out if you are interested, GC@HDgenetics.com
If you’d like to undergo genetic testing again, please reach out to our team and we can figure out if this is the best option for you.
Why don’t you test anyone under 18 years old?
Right now we only offer services to those who are 18 years or older.
If you have a unique circumstance, please feel free to reach out to our team to discuss.
Have another question, we didn’t answer? Reach out to the HD Genetics team anytime and we will get back to you with answers:
• Secure Text: 704-343-8743
• 1-877-HD-GENE-X (877-434-3639)