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Genetic Counselors: Their Key Role in Shutting Down Medicare Fraud

by Joy Larsen Haidle MS, LGC and Trish Brown, MS, CGC

Joy Larsen Haidle, MS, LGC, is a past-president of the National Society of Genetic Counselors and a genetic counselor at the North Memorial Health Cancer Center in Minneapolis.

Trish Brown, MS, CGC is a member of the Precision Medicine and Industry Special Interest Groups, and is currently the Director of Payer Partnerships at Illumina.


They’re at it again--genetic testing fraud targeting Medicare Beneficiaries continues to make headlines and highlights the ever-important role of the genetic counselor in stopping this fraud. In September 2020, the Department of Justice (DOJ) announced the results of an investigation of more than 86 defendants who defrauded Medicare out of $4.5 billion. The DOJ alleges that fraudulent companies paid doctors and nurse practitioners to inappropriately order durable medical equipment, pain medications or genetic testing for patients they had never met, or only had a brief phone call with. This comes just one year after the DOJ charged 35 defendants for fraudulently billing Medicare $2.1 billion for unnecessary cancer genetic testing and telemedicine services in a takedown dubbed “Operation Double Helix.” The National Society of Genetic Counselors (NSGC) spoke out after this first scandal, highlighting the fact that improved access to genetic counselors could have saved the government billions in that scam, and we believe the same of this most recent fraud as well as none of the entities or individuals involved were part of what genetic counselors would consider reputable genetic services companies – these were pure fraudsters who were fairly easily identified.

According to an investigative report by NPR and information released by the U.S. Department of Health and Human Services Office of Inspector General (OIG), fraudsters contacted the beneficiary by phone or through booths at healthcare events and even made door to door visits with the goal of  obtaining the information necessary to bill Medicare. They used scare tactics to convince the patient to hand over their drivers’ license and Medicare card, telling the patient that genetic testing was required or that Medicare coverage would be lost, or that it was needed to guide treatment or prevent fatal conditions. In many cases, the Medicare beneficiaries never actually received the services. 

NSGC members themselves have seen it happen.

In one example, a patient was discharged from the hospital and the treating physician received a fax from a laboratory requesting a large genetic testing panel that was not appropriate for the patient’s diagnosis.  The physician had the genetic counselor in the practice review the case prior to signing the test order and the genetic counselor flagged that the laboratory had been named in a prior Medicare fraud investigation.  After reviewing the pre-selected test, the genetic counselor recognized that because of the complexities of the patients’ case, the original recommendation was not a good quality testing option. Instead, it was recommended that the physician refer the patient to a genetic counselor for a formal risk assessment to help address their questions and determine if they would benefit from genetic testing via a reputable laboratory.  The original fraudsters had hoped that with how busy physicians are, the document would be signed without critical review.

Another patient was mailed a kit addressed to “New Patient.” The forms included in the kit did not state who sent the test or why. It seemed that she had been sent the kit simply because she had Medicare.  The patient received a phone call encouraging her to test, but the caller would not say what organization she represented. The patient received multiple calls urging her to test until she told the woman that she was meeting with a genetic counselor.  The caller encouraged her to send in the kit anyway so that "we can compare results." No legitimate laboratory would actively encourage duplicate testing and billing to compare quality. 

A common theme in cases seen by healthcare providers included free Medicare testing via cheek swabs or saliva samples, offered to their patients at senior centers, and performed by non-healthcare providers.  In one such case, a genetic counselor received a call from a patient who was referred for a legitimate health reason.  The patient was not certain if her appointment was necessary as she had gotten free testing via a cheek swab at her senior center for the “breast cancer genes and medication reaction genes.”  However, she submitted the sample more than a month prior and was still waiting for her test results.  The genetic counselor helped the patient track down the laboratory that was supposedly performing the test to inquire about the methodology, genes included on the test and timing to receive results. The laboratory responded that Medicare developed the test and it was of good quality.  Since Medicare is not an entity that can develop a test, this was a red flag for the genetic counselor who then worked with the patient to report the fraud.  Working with a genetic counselor can help patients and physicians ensure that any test is from a reputable laboratory that delivers quality results that may be used to guide medical decisions.

As a result of increased fraud, the U.S. Department of Health and Human Services Office of Inspector General (OIG) issued a fraud alert in 2019. Because fraudsters continue to prey on unsuspecting Medicare beneficiaries, it is important to revisit the OIG warning with some additional suggestions:

  • If a genetic testing kit is mailed to you, don't accept it unless it was ordered by your healthcare provider. Refuse the delivery or return it to the sender. Keep a record of the sender's name and the date you returned the items.
  • Be suspicious of anyone who offers you "free" genetic testing and then requests your Medicare number. If your personal information is compromised, it may be used in other fraud schemes.
  • A physician, genetic counselor, or other healthcare provider that you know and trust should assess your condition and approve any requests for genetic testing, even if the visit is by phone or video chat.
  • Medicare beneficiaries should be cautious of unsolicited requests for their Medicare numbers. If anyone other than your healthcare provider's office requests your Medicare information, do not provide it.
  • If you suspect Medicare fraud, contact the HHS OIG Hotline.
  • If genetic testing is recommended consider involving a genetic counselor. A genetic counselor has specialized training in clinical genetics and can help determine if genetic testing is appropriate or if the prior recommendations might have been fraudulently recommended and testing was not indicated. You can find a genetic counselor by using NSGC’s Find a Genetic Counselor tool.

Finally, to ensure that Medicare beneficiaries have access to the appropriately credentialed or licensed genetic specialist, send an email of support to your Congressional representative for the “Access to Genetic Counselor Services Act.” This Act provides improved access to genetic counselors under part B of the Medicare program. Sending an email is easy, just follow this link to fill out a simple form to signal your support to your elected officials.

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