NEW YORK (CBSNewYork) — Genetic testing kits are wildly popular — tens of millions were sold this past December alone.

As CBS2’s Dana Tyler reported, the DNA tests can have a serious downside.

At 46 and healthy Carolyn Koutsaftis was surprised when she was denied life insurance.

“I expected that I would absolutely get coverage,” she said.

She believes it was the result of a meeting with a genetic counselor, after finding out that her mother tested positive for the breast cancer gene.

“I can’t think of another reason why I would be denied,” she said.

Scientists say genetic testing can save lives by predicting the potential for disease, but increasingly consumers are finding they’re being denied for life insurance, long-term care, and even disability insurance based on the results.

“Most people don’t think that if they’re getting a genetic test, it could ever come back to bit them, but it can,” said Jamie Court.

Court, with the advocacy group, Consumer Watchdog, said it could happen even if you’re just using a kit to find out more about your ethnicity.

“The real danger is that you may find out you have a marker for a real serious illness,” Court said.

Now, insurance companies want to know about that.

“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 the right to request,” Court added.

Current law protects against genetic discrimination when it comes to health insurance. Lisa Schlager with the non-profit organization FORCE would like the law to also cover life insurance.

“It’s a big challenge because the insurance industry wants to maintain its independence and its ability to determine risk based on their own formula and not a dictated law,” she said.

Schlager doe snot advocate hiding the results of the tests because later you could be accused of fraud.

She and other suggest applying for life insurance, before having any genetic testing done.

“I understand where the insurers are coming from,” Koutsaftis said.

She said it’s time they understand where she’s coming from.

“Individuals who know are more likely to do something about it and to manage it better than somebody who doesn’t want to know, and you would think the premiums would reflect that,” she said.

 

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