The business of personal genetic testing is just starting to hit its stride.
People spend over $5 billion on genetic tests annually, according to a UnitedHealth Group report, and this is expected to increase to $25 billion a year by 2021.
As the industry explodes, people are asking a lot of questions about what genetic testing can do for them — and what unforseen implications might arise.
Anne Wojcicki, cofounder and CEO of the home DNA testing company 23andMe, sat down with astrophysicist and StarTalk Radio host Neil deGrasse Tyson to talk about how the human genome could revolutionize healthcare and biotechnology for our Innovators video series.
In the interview, Tyson asked Wojcicki what people's biggest concerns were about genetic testing. (Since 23andMe has completed over 1 million genetic tests, Wojcicki would know.)
"People usually come to us and they say two things," Wojcicki responded. "One: They say, 'I don't want to know the day I'm going to die.' And I'll say, 'We don't do that.'"
Tyson couldn't believe that people really said that, but Wojcicki assured him it was true.
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Today, genetic testing can only reveal specific disease risk information for a dozen or so genes; it is nowhere close to being able to predict when someone is going to die.
"The second thing that people fear is the insurance questions," Wojcicki said. "And that's actually been rectified in large part with the Genetic Information Nondiscrimination Act, known as GINA. So you actually cannot be discriminated against for knowing your genetic information by your employer or by insurance companies … If you walked in and said, 'I have the BRCA variance for breast cancer,' they cannot discriminate based on that information."
That's true. But while health insurance companies can't discriminate against you if they know the results of your genetic tests, there's a loophole in the law that allows companies offering life insurance, disability insurance, and long-term care to do so.
Fast Company just published a story about a woman who was denied a life insurance policy because of her genetic predisposition to cancer. (She found out through a test that she had the BRCA1 gene mutation that increased her risk.)
The idea behind the loophole is that life insurance companies, for example, have to know someone's full risk profile for diseases if they are going to decide if, and how, to cover them.
But patient advocacy groups argue that it keeps people from harnessing the full power of their genetic information, and could prevent them from getting tests that could alert them to diseases they might be at risk for.
All in all, Wojcicki argued, the benefits of getting a genetic test outweigh any risks.
"Sequencing your genome will put you in control of your own health care," she told Tyson. "Genetic information is about helping you actually be as healthy as you can be."
