Understanding the Difference: Insurance-Billed vs. No-Cost Genetic Testing

In the past, Probably Genetic has been known for our free testing programs designed to remove the logistical and financial barriers to a diagnosis. While these programs remain a core part of what we do, they cannot reach everyone who needs an answer. 

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We’ve recently added an insurance-billed testing option to give individuals and families another way to move forward with testing. This guide clarifies the differences between these two pathways and explains how the insurance-billed route is often the most reliable way to move forward on a predictable timeline, often at a lower cost than patients expect.

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How No-Cost Testing Works

Our free testing programs address specific conditions, informed by collaborative efforts with patient advocacy groups, researchers, and pharmaceutical developers. For each condition, we have a limited number of tests available at a time. As we grow, we continue to expand both the number of conditions we target and the volume of tests we can offer, but this still leaves many patients without timely access to test options that may be necessary for them. Because these programs are built around specific objectives, they have unique requirements:

• Specific Clinical Alignment: Each program is focused on specific rare diseases, which have distinct symptom and family history profiles. Some programs may also have non-clinical requirements, such as limits on patient age or geographical location. Eligibility for these programs is based on how closely your profile matches the criteria of an active initiative at that time. We work hard to launch new programs in additional condition areas, but we cannot guarantee that a program matching your unique profile will launch in the future.
• Finite Capacity and Timelines: Each initiative is capped by a set number of tests and a specific timeframe. Once those resources are used, the program may close, and there is no guarantee that it will receive additional funding or reopen.

Curious if you qualify for a no-cost program? You can complete our clinical assessment to check your eligibility for both our no-cost and insurance-billed pathways. 

The Insurance-Billed Pathway

To provide more families with a path to answers, we have established a process that allows us to facilitate genetic testing through medical insurance. Clinically, this testing option is the same as the one we offer to patients in our no-cost testing programs. Because every insurance plan is unique, we cannot guarantee that this testing option will be free; however, more than 90% of the patients we’ve tested through this option have paid $0 out-of-pocket. Testing through insurance offers several advantages to our patients: 

• Expanded Eligibility:  The insurance-billed pathway considers a much broader clinical profile. This allows us to provide options to many individuals who might otherwise remain on a waitlist for a matching no-cost program to open. It should be noted that because the insurance-billed route relies on clinical insurance benefits, eligibility is still determined by a review of your symptoms and medical history to ensure testing is appropriate and likely to be covered.
• Predictable Timelines: Insurance eligibility is determined immediately after your submission is complete, and there is no limit on testing volume. In most cases, you can schedule a virtual appointment with a board-certified genetic counselor within a week to determine the best path forward for you or your family.‍
• Minimal Costs and Cost Protections: most patients who meet the eligibility criteria for genetic testing are not charged any out of pocket costs. Most of our patients also qualify for financial assistance programs, which ensures you aren’t charged more than what your family can afford. ‍
• Free Genetic Counseling: to help you make an informed decision about whether testing through insurance is the right option for you, we cover the cost of a pre-test appointment with a board-certified genetic counselor. In this appointment, your genetic counselor will review your medical history, likelihood of coverage, and estimated costs, and help you make a decision about testing. There is no obligation to proceed with testing after attending this appointment.‍

Understanding the Insurance "Coverage Spectrum"

One of the most confusing parts of healthcare is what it actually means for a test to be "covered." In this case, coverage refers to whether your insurance provider agrees that the test is medically necessary.

Of the eligible patients we’ve tested through insurance so far, after insurance and patient assistance programs, more than 90% paid $0 out of pocket. 

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‍At a Glance: Understanding our Programs 

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Which Path is Right for You?

If you prefer to wait for a no-cost test, we will keep your profile active and notify you if a program matching your symptoms becomes available. However, it is difficult to predict if or when a specific match will occur. If your goal is to move forward on a more certain timeline, the insurance-billed pathway provides more autonomy. 

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The first step for both pathways is the same.

By completing our online symptom assessment, our clinical team can determine which program you are currently eligible for and help you map out your next steps toward a diagnosis.