Here’s how it works:
1.
Intake Survey
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.
3.
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
5.
Follow-Up
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.
2.
No-Cost Genetic
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
4.
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
FAQs
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 $750. The initial 1-hour genetic counseling session & all subsequent sessions are at no-cost. Individuals are only charged if they decide to move forward with testing. If $750 is a barrier for individuals, we have a partnership with Help4HD International to provide financial assistance to cover whatever cost you can’t afford.
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 $100 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 $750 fee includes the cost of the genetic test with HD Genetics’ partner laboratory and all of our genetic counseling sessions. Once you’ve tested with HD Genetics you can setup appointments with our team at no-cost, however much you’d like into the future. There are no other costs or additional 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 including an option to use a pseudonym (fake name).
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: [email protected]
Where are your services available?
We can provide services in all 50 states.
We do not have any short-term plans to expand outside of the USA.
How long does it take to get results?
From the time you fill out an intake form (found here) until the time you get your results can be close to 1-month. The timetable is a bit dependent on each individual. We can see new clients for their initial genetic counseling appointment in as little as a week after filling out the intake form. We never want to rush the process, but we can always work with each individual to meet their needs.
Here is a snapshot of the timeline that your experience could look:
- Day 1: You fill out our intake form.
- Day 2: You get a text from our genetic counselor (Wes Solem) asking to setup an intake call to confirm the details of your intake form.
- Day 5: Intake call with Wes (typically 30 minutes). Setup genetic counseling video call.
- Day 12: Genetic Counseling Appointment (typically 45 min – 1 hour). Based on your requested time and availability. If we all decide it makes sense to move forward with testing….
- Day 13: HD Genetics gets saliva kit ordered
- Day 20: Saliva kit arrives to your provided address
- Day 21-24: You provide saliva sample and put back in the mail via FedEx. You contact HD Genetics to let us know you put the sample in the mail.
- Day 40-45: Results Appointment – this date can be scheduled anytime you would like and we recommend about 20 business days after your sample is sent in. At your request we can move up your results appointment if your results come in sooner. We do not look at your results until moments before your appointment.
- Day 47-55: Follow up call with HD Genetics about a week after your results to check-in.
- Day 100+: we really appreciate the opportunity to have a call with you two months after you get your results. These can be short and sweet, but it’s an opportunity to connect to make sure you have the proper roadmap moving into the future. This is also a time we can provide you an update on clinical trials, resources and upcoming events for you or your family.
- *****PLEASE NOTE THIS IS ALL VARIABLE****
What is HD Genetics’ clinical protocol?
HD Genetics has a rigorous protocol, created and vetted by many HD and genetic experts. The gold standard protocol 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 and one we are very proud to follow with our clients.
If you’d like a copy of our protocol, please reach out to [email protected]
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.
To gain a full understanding of how we handle your information, please reach out with specific questions or read our privacy policy found here.
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, [email protected].
We plan to open a new service in 2023 that provides resource navigation for people who have already undergone genetic testing. We hope this service will help connect people to clinical trials, proper care, and advocacy resources and programs.
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 $100 per hour. Please reach out if you are interested, [email protected]
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.
We plan to open a new service in 2023 that provides resource navigation for people who have already undergone genetic testing. We hope this service will help connect people to clinical trials, proper care, and advocacy resources and programs.
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.