We tend to think of our DNA as belonging to us alone. After all, DNA, or scientifically speaking, deoxyribonucleic acid, is what defines us as individuals.
At their most basic level, the chromosomes on DNA describe whether we are male or female, and they also provide directions for our genes to express our hair color, skin color, eye color and a host of other traits.
In recent years, the field of DNA testing, particularly for ancestry research, has exploded. Because the information in our DNA can tell us so much about ourselves, our ancestral history and our potential medical issues, it also has potential to be misused.
Our personal DNA “definition,” so to speak, is now the target of fraud. Scammers are offering cheek swabs for genetic testing for identity theft or fraudulent billing purposes.
There are many ways that these scammers are targeting individuals, such as through telemarketing calls, booths at public events, health fairs and even door-to-door visits.
The scam might go something like this: Scammers might visit senior-living communities or low-income neighborhoods and offer gift cards in exchange for DNA tests. A booth at a casino could offer free chips in exchange for your personal info along with testing. They might offer you information about “your family’s risk of cancer” while at the same time describing their sophisticated technology but no mention of any physicians involved in their testing.
Bloomberg.com described low-income residents in Louisville, Kentucky being approached by people operating out of a van who were offering to pay Medicaid recipients $20 for DNA swabs and their health insurance information. Investigators in Nebraska have received reports of people visiting senior living communities, assisted living communities and senior centers offering to swab the cheeks of seniors for genetic material in exchange for testing for cancer risks.
Some consumers have been taken advantage of by being offered genetic testing through fairs. Sometimes they were incentivized to take the test with a monetary reward of some kind, then the information was used to fraudulently bill Medicare.
“Tests in this type of situation are not medically necessary, and those individuals did not receive any type of genetic counseling,” says Dr. Nicoleta Voian, MD, MPH, a clinical cancer geneticist at Providence Genetic Risk Assessment Clinic. “And they were asked for their Medicare number and a lot of medical information that could be used in different ways.”
To protect yourself, Voian recommends not using any genetic testing kit unless it is ordered by your doctor and you get the kit straight from them.
Typically, when you’re working with a physician or genetic counselor, the samples are sent to a trusted laboratory for testing, and your ordering provider will explain the results.
When this is not possible, and you are appropriate for genetic testing, your medical provider will discuss options.
There is a “hybrid” form of genetic testing which the patient can initiate, she says. In that case, a physician must be listed on the test, but the genetic counseling can be done over the phone.
“When we offer genetic testing, it is a complex process,” Voian says. “In the pre-testing counseling we discuss the medical history, family history, the appropriateness of the genetic testing. We discuss the extent of the testing. We discuss the implications of a positive, negative or variant results of uncertain significance (inconclusive). We discuss genetic privacy. There are many aspects that should be discussed before someone would proceed with genetic testing.”
Further, Voian says there are many different types of genetic tests so many individuals may not be aware of what kind of test they’re actually taking. And because many consumers go into this testing unaware, people can take advantage of that information.
In February, GenomeDxBiosciences Corp., settled civil claims connected to genetic testing for nearly $2 million.
In March, the Center for Human Genetics in Cambridge, Massachusetts paid $500,000 to settle the attorney general’s allegations that the company had overbilled MassHealth for genetic tests.
More recently, a New Jersey man was sentenced to 50 months in prison for luring seniors into providing saliva samples and then passing along the samples to his employer, a testing lab.
Voian says Providence can’t endorse direct-to-consumer genetic testing such as those offered by Ancestry.com or 23andme. These usually involve the consumer spitting into a tube, which is then sealed and mailed back to the company. The company tests for genetic markers to help the customer learn more about their cultural ancestry, and even some modern relatives. What most consumers don’t know, Voian says, is what happens to their sample once the testing is done.
Your personal information could be resold to a third-party for instance. Will the sample be destroyed or stored indefinitely? Who has access to the storage facility?
There are all kinds of questions that many genetic testing companies are just not answering.
Some may worry about the costs of genetic testing. Keep in mind, though, that if a test is medically necessary and is ordered through a physician’s office, the testing is generally covered by the patient’s insurance.
The U.S. Department of Health and Human Services Office of the Inspector General offers steps to protect yourself from these types of scams.
Don’t accept a genetic testing kit unless it was ordered by your physician. If one arrives in the mail, 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. This could compromise your personal information.
If you are offered genetic testing or are considering it, discuss it with a physician you know and trust.
Medicare beneficiaries should be cautious of unsolicited requests for their Medicare numbers. If anyone other than your physician’s office requests your Medicare information, do not provide it.
If you suspect Medicare fraud, contact the HHS OIG Hotline at oig.hhs.gov/fraud/report-fraud.