SAN FRANCISCO (KPIX 5) — Genetic testing kits promise insights into your ancestry and could help you find long-lost relatives. But, federal regulators and consumer advocates warn there are downsides to giving away a sample of your spit: it could make it harder to buy life insurance.
Amy Jones was delighted to learn the results of her mail-in DNA kit.
“I called my Dad and said ‘We’re Irish!’” Jones recalled.
But Jones, a mother of four, may have inadvertently given away more information than just her family background.
According to the Federal Trade Commission, home DNA tests reveal much more than just your ethnicity. The agency recently issued a warning saying “That tiny [saliva] sample can disclose the biological building blocks that make you, you.”
“Most people don’t think that if they get a genetic test it could ever come back to bite them, but it can,” said Jamie Court of the group Consumer Watchdog.
He said tests are getting more sophisticated and could soon, if not already, determine if your raw DNA data contains a marker for a serious illness.
“If you apply for life insurance they do have a right to get all your medical records. And if you’ve had a genetic test taken, they do have a right to request it,” Court said.
California’s Department of Insurance tells KPIX5 that while health insurers may not use or consider genetic test results when selling a policy, companies that sell life insurance, can. The Department of Insurance says life insurers can legally ask customers if they’ve ever taken a DNA test, and ask for the results.
And if customers refuse to hand over the data, or get caught in a lie, companies can terminate their policy, or refuse to sell them one.
“Consumers need to think carefully about whether they want to take these tests,” said California Insurance Commissioner Dave Jones. “It will not impact their health insurance under current law, but it could impact their life insurance.”
The DNA data file that’s created to determine user ethnicities also contains the key to decode genetic health risks.
And Court warns that once a DNA data file is created – even one solely created to determine ancestry – the information is out of your hands.
He says an insurer could ask you to download or hand over the raw data, which could be decoded to reveal genetic health risks ranging from cancer to obesity to alcoholism.
“It could mean you don’t get insurance,” Court maintains.
Federal law currently does protect against genetic discrimination. So right now, health insurers cannot hold your genes against you. But Court warns the laws are ever-changing.
“You should only submit to a DNA test if they agree to destroy the sample,” he advises.
Both 23&Me and AncestryDNA insist they will destroy customers information upon request. However, there are exceptions if you’ve opted-in to sharing your data with medical researchers. Consumer Watchdog says roughly 80 percent of people who take the tests choose to share their data.