RICHMOND, Va. (WRIC) — Did you or someone you know get an at-home DNA test kit for Christmas? They were one of the hottest holiday items.
It’s an easy way to learn about your ethnic background, and now some promise to reveal potential health risks.
Medical experts, however, say buyer beware, saying there’s nothing more private and personal than your genetic information, and if you’re not comfortable giving someone your social security number, you need to think twice about sharing your DNA.
Medical professionals also warn that there’s a difference between the pricey doctor ordered test at a certified lab and spit kits available online.
“There are some studies that suggest the error rates on direct to consumer testing may be as high as 40 percent,” Dr. Jim Mumper, Chief Medical Officer at PartnerMD, said.
PartnerMD has teamed up with VCU to offer genetic testing. Dr. Mumper warns many of these tests don’t look at all your DNA and instead only analyze a small selection of genes. He says that could produce misleading results. “There have been instances of patients who have undertaken medical procedures based on false positive results,” says Dr. Mumper.
The other key concern is privacy. Many companies say your DNA is securely stored and your genetic data is stripped of personally identifiable information. Yet, experts warn there’s always a chance of a hack. Plus, testing companies are not all the same when it comes to sharing information.
Ancestry will share information with law enforcement if they obtain a search warrant in a valid trial, grand jury, or subpoena.
23andMe said in a statement “We do not share any information with employers, insurance companies, law enforcement agencies or any public databases.”
Yet companies like 23andMe acknowledge that DNA data is sometimes shared or sold with to third parties for use in research. 23andMe recently struck a deal with a pharmaceutical company to share DNA information from customers. We’re told those customers have to opt-in to sharing that information.
“The direct to consumer testing is not protected under HIPAA,” Dr. Mumper said.
Dr. Mumper explains while state and federal laws prohibit health insurance companies from raising your rates due to genetic health risks uncovered by one these tests, that’s not the case with life insurance.
“I regret that I did it,” says Kristin Richardson, a patient and employee at PartnerMD. Richardson admits she took one for those at-home DNA tests to learn more about her heritage. Now, she wishes she hadn’t.
“Handing over my personal identity to a random website, I wouldn’t do it again,” she said.
Richardson has now done a genetic test through PartnerMD. The results were rough.
“So, now I know I am twice as likely as the average person to develop heart disease, stroke and Alzheimer’s,” she says.
But unlike getting results in the mail or online at PartnerMD, genetic counselors, nurses and doctors are helping her makes sense of the data. She is working with them on healthy habits so her DNA doesn’t have to be her destiny.
23andMe states in their fine print: “The test is not intended to diagnose any disease and does not describe a person’s overall risk of developing any type of cancer.”
A spokesperson for 23andMe also said this:
“Our Health + Ancestry Service includes the full 23andMe Ancestry service and an additional 90+ reports on genetic risk, carrier status, wellness and physical traits. This is the first and only genetic service available directly to consumers that includes reports that meet FDA requirements for clinical and scientific validity. We analyze, compile and distill the information extracted from 650,000 points in your genome into reports you can access online.
You can learn about your personal health risk for diseases such as Late-Onset Alzheimer’s Disease, Parkinson’s Disease, hereditary thrombophilia (harmful blood clots) and alpha-1 antitrypsin deficiency, which could lead to lung and liver problems. We also provide more than 40 reports on your carrier status for certain diseases, like cystic fibrosis or sickle cell anemia. These reports do not tell you your own personal risk for the condition, rather the likelihood you may pass down a harmful genetic variant to your offspring, who may be affected by the disease if your partner is also a carrier.
Knowing this information can help you make more informed decisions about your health and lifestyle.”
Ancestry tells 8News: “As in everything we do, protecting your privacy is our highest priority, so we will continue to place you in control of your data – that means both you and your counterpart must consent to participate in any Traits Comparison.”
You can read more from Ancestry here.
Meanwhile, some lawmakers are calling for more scrutiny over these tests and the fine print. Some are asking the federal trade commission to step in.