DNA privacy: test results can affect your life insurance coverage
Companies can not use your genetic information against you in health insurance or jobs – but no laws apply to life insurance
Family plot led Larry Guernsey to buy his wife’s DNA test kit for holidays.
“She has always been interested in genealogy,” said Guernsey.
The $ 99 AncestryDNA sample test uses saliva to unlock your descent.
“A simple experiment can reveal your ethnic mix, like if you’re Irish or Scandinavia – or both,” says a commercial.
For Guernseys, the test was supposed to be fun.
But their curiosity extended to skepticism when they read the fine print.
By taking the test they were giving Ancery “a permanent permanent convertible license worldwide without fees” to use their DNA, according to the company contract.
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“This whole phrase is” permanent, free of property rights, all over the world, and removable, it seems to have left it open to do anything you want, “said Gernzi.
Guernsey worries that the results may put his family’s DNA in the hands of an insurance company that may deprive them of covering the gene that carries the risk of illness or life-threatening condition.
“You can access some really exotic science fiction scenarios,” he said.
Under federal law, companies are not allowed to use your genetic information against you in matters such as health insurance or work.
But this protection does not apply to things like life insurance or long-term care insurance, and the laws are constantly changing.
Privacy is a major concern because many genetic testing companies sell their information to pharmaceutical companies and others for research purposes.
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What will happen if the databases are compromised?
All major companies have safeguards in place, but more than 92 million accounts of genealogy and DNA testing service “MyHeritage” were found on a private server last summer.
Although DNA data are not penetrated, they have shown potential risks.
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Hank Greeley, a Stanford University professor, writes books on the intersection of biotechnology and law.
His advice is simple: “If it bothers you, if it bothers you, if you’re worried about what might be there, you should not sign this contract.”
Both EvidenceDNA and 23andMe say they will destroy the results of your DNA test if you ask them. There is an online setup to apply.
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