
I'm tired of watching families struggle to get straight answers about genetic testing coverage.
After years of working with thousands of patients navigating the healthcare maze, I've seen the same story play out over and over. Someone suspects their child has a genetic condition. Their symptoms don't fit neatly into a predefined box in clinical care guidelines. And when they ask their insurance company whether genetic testing is covered, they get... nothing. Vague policy language. Endless hold music. Denials that don't explain what would have been approved.
The system is designed to be confusing. And it's costing families years of answers.
The average diagnostic journey for a rare genetic condition takes 5-7 years. That's 5-7 years of watching your child struggle while doctors run test after test, never quite finding the answer. Meanwhile, the one test that could actually provide clarity, comprehensive genetic sequencing, otherwise known as whole-genome or whole-exome sequencing, sits just out of reach, buried under insurance bureaucracy no one will explain.
Patients and their families deserve better than this labyrinth. So we built something to help.
Here's what insurance companies don't tell you upfront: whether your genetic test gets covered depends on ten or more different factors, and most of them aren't written down anywhere you can easily find.
Your coverage depends on:
And that's just the beginning.
The statistics tell the story insurance companies would rather you not see:
Many major insurance plans do cover genetic testing when it's deemed medically necessary, but getting to that determination is where families hit walls. Recent analyses of U.S. commercial plans suggest that roughly 50% (half) of insured individuals have coverage for exome sequencing (with or without genome sequencing) when medical-necessity criteria are met2, while others may not have adequate coverage. How do you know what those criteria are? Finding them spelled out clearly is no small task.
Medicare also covers genetic testing for specific conditions when ordered by a qualified healthcare provider and deemed medically necessary, but what qualifies as "medically necessary" changes based on your situation, your symptoms, and frankly, how well your doctor knows how to navigate the system.
Here's what happens all too often: families spend months gathering documentation, getting referrals, waiting for appointments with specialists, only to submit for pre-authorization and receive a denial letter stating that their case "doesn't meet medical necessity criteria," without explaining what would.
Partnering with the best clinical, CAP/CLIA-accredited reference labs in the country, as well as telehealth providers and physicians that specialize in genetic testing for rare conditions, we’ve learned a thing or two about what moves the needle.
Your symptoms matter more than you think. Insurance companies consider specific symptom combinations that suggest a genetic cause. If your child has seizures plus developmental delays, plus low muscle tone, that pattern carries weight. But "just" developmental delays? Much harder to get approved, even though the underlying cause could be exactly the same.
Previous diagnoses can help or hurt. If your child already has an autism diagnosis, that can actually make it easier to get genetic testing covered, but only if the right medical justification is used. A diagnosis of "global developmental delay" without specifics? That can be treated as not specific enough.
Who orders your test matters enormously. A referral from a genetic counselor or a medical geneticist carries more weight than orders from a general practitioner, even when they're seeking the same answers.
The medical reason matters. Testing for a specific suspected condition is approved at higher rates than testing for "rule out genetic causes," even if the clinical picture is identical.
I wish I could tell you that insurance companies will suddenly become transparent about their coverage policies. I wish I could say that next year, it'll be easier to get straight answers.
But I can't. Collectively, our team and the experts we partner with have been at this for a long time, and our health system is slow to change.
So we built something different: a 30-second assessment that tells you whether insurance coverage might be possible for your situation.
It's free. It's fast. And it asks the questions that actually matter:
Take the 30-second insurance coverage assessment →
Here's what makes this different from calling your insurance company:
If coverage looks unlikely for your current situation, we'll let you know and give a brief explanation of why. Maybe you need a more specific diagnosis first. Maybe you need a referral to a geneticist who can provide better documentation.
If coverage looks possible or likely, we'll let you know. And, if you want, we can connect you with a board-certified genetic counselor for a free telehealth appointment to actually pursue that coverage. Just create a profile with Probably Genetic and add the same information that you share with the assessment tool.
Our telehealth and lab genetics experts will:
Here's what I know after years in this space: people shouldn't need to become insurance policy experts just to get answers about their health.
You shouldn't need a medical degree to understand whether genetic testing is covered. You shouldn't need to make dozens of phone calls to different departments, repeating your or your child's symptoms over and over, just to find out if insurance will help.
The system is broken. We can't fix the whole system overnight. But we will keep building tools and services to help you navigate the system more easily, faster, and with better results.
Take 30 seconds to complete our insurance coverage assessment. Answer a few questions about your insurance, your symptoms or diagnosis, and your situation. Finally, answer that burning question, “How to know if genetic testing is covered by insurance?” and if it is, get connected with a genetic counselor who can actually help you pursue it.
Complete the insurance coverage assessment →
Still not sure if genetic testing is right for your situation? Our genetic counselors can help you understand that, too. The telehealth consultation is free, whether or not your insurance covers the test.
Does this assessment guarantee coverage? No. Only your insurance company can approve coverage. But this assessment is built on patterns from patient cases, and it can tell you whether coverage is likely, possible, or unlikely based on your specific situation.
What if my insurance isn't listed? Most major commercial and government-insured options are included, such as Aetna, Blue Cross Blue Shield, Cigna, UnitedHealthcare, Medicare, Medicaid, and smaller plans. If yours isn't listed specifically, it will be harder for us to offer coverage insights at this time. However, if you create a profile with Probably Genetic, you may still have the opportunity to speak with a genetic counselor.
Is the genetic counseling appointment really free? Yes. Whether insurance covers your test or not, the genetic counseling consultation is free for eligible patients with a Probably Genetic profile. We believe families deserve expert guidance to navigate these decisions.
What if insurance doesn't cover the test? You can discuss alternative options with the genetic counselor and/or the laboratory, including the Probably Genetic free genetic testing programs for specific conditions, research opportunities, and self-pay options if that is of interest.
How long does this process take? The assessment takes 30 seconds. If you qualify for a genetic counseling appointment, those are typically scheduled within a week. Insurance pre-authorization timelines vary, but our genetic counselors know how to navigate the process efficiently.
Wishing you and your family find the answers you are looking for,
Caty
The diagnostic journey is hard enough without insurance bureaucracy making it harder. Let us help you determine whether coverage is possible and connect you with experts who can make it happen.
Get started with the insurance coverage assessment →
Over 100,000 patients have created a profile with Probably Genetic to confirm their eligibility for our free genetic testing and counseling programs.