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What is HD Genetics?
HD Genetics is a privately led healthcare company offering a best-in-class genetic testing and counseling experience and clinical trial research access to individuals impacted by Huntington’s disease. We were founded in 2022 by B.J. Viau (View), an HD family member, and we’ve since served more than 1,500 individuals across all 50 U.S. states.
Our mission is simple: empower each person throughout their HD journey.
Is HD Genetics part of a hospital or larger healthcare system?
No. HD Genetics is a privately owned LLC and is not affiliated with any medical center, hospital, or pharmaceutical company. This independence is intentional — it allows us to design our entire service around the needs of HD families rather than around insurance systems, geography, or institutional protocols.
Who founded HD Genetics?
HD Genetics was founded by B.J. Viau (View), an HD family member whose mother was diagnosed with Huntington’s disease in 1995. B.J. spent over 15 years working in the pharmaceutical industry — including the launch of the first FDA-approved medicine for Huntington’s chorea — and co-founded the Huntington’s Disease Youth Organization (HDYO) before launching HD Genetics in 2022.
Read more about B.J. and our full team on our About page.
Where is HD Genetics located?
HD Genetics is a fully virtual healthcare service — we don’t have a physical clinic. Our team works remotely, and all of our services are provided via secure video call from the comfort of your home. We can provide genetic testing services to anyone in the United States, and our Clinical Trial Connection service is open to individuals across the United States and Canada.
What services does HD Genetics offer?
We offer two core services, both designed exclusively for the Huntington’s disease community:
1. Genetic Testing & Counseling — At-home HD genetic testing with full counseling support, for individuals at-risk for HD. Cost: $750 all-in.
2. Clinical Trial Connection — Free, personalized matching to HD clinical and observational studies, for anyone in an HD family.
Both services are guided by HD-specialized experts, and both prioritize privacy, accessibility, and compassionate care.
What’s the difference between Genetic Testing and Clinical Trial Connection?
Genetic Testing & Counseling is for people who want to find out if they carry the HD gene mutation. It includes counseling, an at-home saliva test, lab analysis, and results disclosure — for a flat $750 fee.
Clinical Trial Connection is a free service that connects you with HD clinical and observational studies that may be a fit for your situation. You don’t need to have been tested with us to use this service.
The two services are independent — you can use either, both, or neither.
Can I use the Clinical Trial Connection service if I’ve already been tested elsewhere?
Absolutely. Our Clinical Trial Connection service is open to anyone in an HD family, regardless of where (or whether) you’ve been tested. If you have prior test results, we can use them to help match you with studies more efficiently — but they’re not required.
Do you provide any services beyond testing and trial connection?
Yes. In addition to our two core services, we offer a Clinical Study Navigator program led by Spencer Diehl, LISW — a licensed clinical social worker who supports individuals who are actively participating in specific HD clinical studies. This service is available on a study-by-study basis.
How much does HD genetic testing cost?
Our flat fee for HD Genetic Testing & Counseling is $750. This is an all-in cost — there are no hidden fees, no add-ons, and no surprise bills.
For comparison, a 2017 study of 777 HD tests at HD Centers of Excellence in the United States reported an average cost of $1,157.
If $750 is a barrier, our partnership with Help4HD International provides financial aid. To date, no client has been turned away due to inability to pay.
What’s included in the $750 fee?
The $750 fee covers:
✓ Pre-test genetic counseling session (no-cost — you only pay if you decide to move forward)
✓ At-home saliva collection kit shipped to your door
✓ Laboratory analysis through our HIPAA-compliant partner lab
✓ Results disclosure session with full explanation
✓ Written test report and HD resource guide
✓ Lifetime follow-up access to our team — no extra cost, ever
There are no other fees and no recurring charges.
Is the Clinical Trial Connection service really free?
Yes — completely. There are no fees, no insurance billing, no obligation to enroll in any study, and no recurring charges. The service is funded by our broader mission to support the HD community.
What payment methods do you accept?
We accept debit/credit cards, HSA/FSA cards, and money orders. We do not bill insurance directly — and that’s intentional. Keeping insurance out of the process protects your privacy by ensuring your results never appear in your insurance records automatically.
If you’d like to submit a receipt to your insurer for possible reimbursement after testing, we can provide guidance.
What if I can’t afford the $750 testing fee?
Our partnership with Help4HD International provides financial aid for individuals who can’t afford the full cost. Currently, more than 50% of clients pursuing genetic testing through HD Genetics request some level of financial aid — and to date, no one has been turned away due to inability to pay.
Just mention financial aid during your first counseling session with our team. There’s no separate application form, no income verification, and no judgment.
Can I remain anonymous throughout the testing process?
Yes. You can use a pseudonym (a fake name) throughout the entire testing process if privacy is your priority. During your first counseling session, our team will walk you through what anonymous testing means, the trade-offs to consider, and how to choose the approach that fits your situation.
Will my genetic test results affect my health insurance?
We never share your results with any insurance company. Your results don’t automatically appear in your medical record. If you have existing life insurance or long-term care insurance before testing, those policies will not be affected by your results.
Your counselor will discuss insurance considerations with you during your first session — including the implications for future insurance decisions.
Do my test results go on my medical record?
Not automatically. Whether your results become part of your medical record is entirely your choice. Many clients choose to keep their results separate, while others share them with specific healthcare providers — typically their primary care physician or neurologist — when it’s helpful for their care.
You decide who sees your results and when.
How does HD Genetics protect my personal information?
HD Genetics takes the storage and security of your health and contact information very seriously. All technology systems used by HD Genetics and our partner laboratory to collect and store your data are HIPAA-compliant.
You can read our full Notice of Privacy Practices on our Privacy Policy page.
Do you share my information with anyone?
We share your information only with:
→ Our partner laboratory (required to process your sample)
→ A partnering physician in states that require a prescriber to order genetic tests
→ Anyone you explicitly authorize in writing
We never share your name, contact info, or other identifying information without your permission. We don’t sell information, use it for marketing, or share it with advertisers.
In some cases — and only with your consent — we may share de-identified information with HD researchers to help advance treatment development.
How long does the entire testing process take?
Most clients complete the full journey from intake form to receiving results in 30 to 45 days. The exact timeline depends on your pace — we never rush the process. You can move faster if you’re ready, or take more time between steps if you need it.
Some clients even ask for their results to be held by the lab until they feel emotionally prepared to receive them.
How is the testing performed?
We use an at-home saliva collection kit shipped to your door. You provide a saliva sample at your convenience, then mail it back using a pre-paid FedEx return label. No needles, no lab visits, no clinic appointments.
The sample is then analyzed by our HIPAA-compliant partner laboratory to measure the CAG repeat count in your HD gene.
Is the saliva test as accurate as a blood draw?
Yes. The saliva test has the same diagnostic accuracy as a blood draw for measuring CAG repeats in the HD gene. The science behind both methods is identical — saliva simply offers a more convenient, less invasive way to collect the DNA sample.
What happens if I change my mind partway through?
You can stop the testing process at any point — even after providing your saliva sample. Some clients ask for their sample to be held by the lab until they feel emotionally ready to receive their results.
Testing is your decision, on your timeline. We will never pressure you to move forward.
When do I receive my results, and how?
Approximately three weeks after your sample arrives at the laboratory, your results are ready. Rather than emailing them to you, we schedule a private virtual session where Wes Solem, our Director of Genetics, walks you through your results in full — explaining what they mean for you and your family.
After the session, you’ll receive a written copy of your test report and an HD resource guide tailored to your situation.
Can I bring a family member or partner to my counseling sessions?
Absolutely — and we encourage it. Having a trusted person with you during counseling and your results disclosure can be a meaningful source of support. Just let us know in advance who will be joining.
Who can use HD Genetics’ testing service?
Our genetic testing service is available to individuals who are:
✓ At-risk for Huntington’s disease (with a biological family member who has or had HD)
✓ 18 years of age or older
✓ Living in the United States
✓ Interested in pursuing genetic counseling and/or testing
If you’ve already tested elsewhere and want to discuss your results with our team, we can also provide complimentary follow-up sessions.
Why don’t you test anyone under 18?
Genetic testing for adult-onset conditions like HD is a deeply personal decision that requires informed consent — which is typically reserved for adults under HD genetic counseling protocols. This standard is in place to protect minors from making a life-changing decision before they’re developmentally ready to fully understand and process the result.
If you have a unique circumstance involving a child you suspect may have juvenile HD, please reach out to discuss.
Where is the Clinical Trial Connection service available?
Our Clinical Trial Connection service is open to individuals located in the United States and Canada. This service is completely free and available regardless of whether you’ve been tested.
Can I use HD Genetics’ services if I live outside the U.S. or Canada?
Currently, our Genetic Testing & Counseling service is only available to individuals living in the United States. Our Clinical Trial Connection service supports individuals in the United States and Canada.
We don’t have short-term plans to expand outside North America. If you live elsewhere, we recommend reaching out to your country’s national Huntington’s disease advocacy organization for resources.
What is Clinical Trial Connection?
Clinical Trial Connection is a free service that helps you understand, evaluate, and get connected to current HD clinical and observational studies. We provide:
✓ Education on the current HD research landscape
✓ Personalized matching based on your situation, location, and interests
✓ Direct introductions to study sites and coordinators
✓ Ongoing updates as new trials open
The service is led by B.J. Viau (View), who has personally participated in multiple HD studies including PREDICT-HD, PREVENT-HD, ENROLL-HD, and HD Clarity.
Do I need to be gene-positive to participate in HD research?
No. Many HD studies actively enroll a range of participants, depending on the study type. During your free consultation, B.J. will walk you through what’s currently enrolling and which studies may align with your situation.
What types of HD studies might I be matched with?
The HD research landscape includes several categories:
→ Disease-modifying therapy trials
→ Observational and natural history studies
→ Biomarker and early-detection research
→ Studies for pre-symptomatic gene carriers
→ Studies for gene-negative family members
→ Symptom management clinical trials
Specific studies change frequently. During your free consultation, B.J. will walk you through what’s enrolling at the time of your conversation.
How does HD Genetics know which trials are enrolling?
We maintain direct relationships with the pharma and biotech sponsors running HD trials, study sites and coordinators across the country, and the Huntington Study Group (HSG) through our official partnership. This gives us real-time visibility into what’s actively enrolling, what’s coming next, and which study sites have openings.
Who will I work with for genetic testing?
Your main point of contact for genetic testing is Wes Solem, ScM, CGC — our Director of Genetics. Wes is a Certified Genetic Counselor who earned his Master of Science in Genetic Counseling from Johns Hopkins University and has been part of HD Genetics since its inception.
He’s personally guided every single client through our testing process since day one — making him one of the most experienced HD genetic counselors in the world.
You can reach Wes anytime at Wes@HDgenetics.com.
Who will I work with for Clinical Trial Connection?
Your main point of contact for Clinical Trial Connection is B.J. Viau (View), our Founder and Director of HD Research Access. B.J. has personally participated in multiple HD observational studies — including PREDICT-HD, PREVENT-HD, ENROLL-HD, and HD Clarity — and brings 15+ years of pharmaceutical industry experience to every conversation.
You can reach B.J. anytime at BJ@hdgenetics.com.
Why do you have neurologists on your team?
Dr. Jaime Hatcher-Martin and Dr. Liz Ferluga are board-certified movement disorders neurologists who oversee our genetic testing orders in states that require a prescribing physician to initiate testing. They’re not involved in the day-to-day counseling experience, but their oversight ensures we can serve clients in every U.S. state.
Both are passionate advocates for telemedicine and access to care for HD families.
How can I talk to someone before signing up?
We make it easy to meet our team before committing to anything. You have three options:
→ Monthly Open Office Hours (free, virtual): First Wednesday of every month at 12:30 PM EST via doxy.me/HDgenetics
→ Weekly Instagram Live Q&A: Every Tuesday at 11:00 AM EST via @HD_Genetics
→ Direct contact: Call or text (980) 378-1985 or email gc@hdgenetics.com
No intake forms required for any of these. Just show up and ask whatever you want.
What are Office Hours?
Office Hours is our free monthly virtual session where anyone in the HD community can drop in and ask Wes anything about genetic testing, clinical trials, or our team. There’s no script, no agenda, and no obligation — just an open conversation.
It happens the first Wednesday of every month at 12:30 PM EST. Join by visiting doxy.me/HDgenetics when the session begins. Hosted in partnership with HD Reach.
How can I contact the HD Genetics team directly?
You can reach us in the way that’s most comfortable for you:
📞 Call or text: (980) 378-1985
☎️ Toll-free: 1-877-HD-GENE-X (1-877-434-3639)
✉️ General email: gc@hdgenetics.com
✉️ Email Wes: Wes@HDgenetics.com
✉️ Email B.J.: BJ@hdgenetics.com
📱 Instagram: @HD_Genetics
We respond personally to every message. No call centers, no automated replies.