Personal data doesn’t get much more personal than this- that’s your DNA.
Consumer testing companies promise that in exchange for a vial of spit and a fee, they’ll
reveal your heritage and clues to your health.
Called direct-to-consumer genetic testing, the industry has grown in popularity- sales
are projected to triple in the next five years.
But watch out.
After the test is done, those companies still have your genetic data, and there are few
limits to what they can do with it.
If you read the privacy and the terms of use policies for any of these genetic testing
companies, they actually outline for you very clearly all the reasons you might want to
really think hard before you participate in them// Recently 23andMe struck a deal with
GlaxoSmithKline to provide them data to develop drugs// that is a huge part of the business.
These agreements, which consumers must sign, also say the companies may have to share data
with law enforcement if compelled by a court order.
They haven’t yet complied with any requests, but they may not need to: Police in Sacramento
County, California, believe they cracked the long-cold case of the Golden State Killer
by matching DNA from a crime scene to one of his relatives through an open-source genealogy
website.
In 2008, Congress passed GINA - or The Genetic Information Nondiscrimination Act -- which
is meant to bar employers and health insurers from using people’s genetic information
against them.
But there are some loopholes in that law.
For example, life insurers could use your genetic information to decide whether to offer
you a policy or not.
But at least the products do what they advertise, right?
Welllllll, yes and no.
Brown: One thing that they can definitely 100 percent tell you, is other people that
you're closely related to// But after that you get declining accuracy for basically every
other application of genetic testing
For example, breast cancer.
You get a test result back that says you're negative for one kind of breast cancer, but,
maybe you are at risk for other kinds of breast cancers, cause there's thousands of markers
for these conditions and they're not all well understood.
Some consumer DNA companies also claim to be able to give you further health insights.
The science is just not there in those roles to effectively say how you should be exercising
or eating or what skin care products you should be using based on your DNA.
Even if you decide a DNA test isn’t for you, you might want to convince your relatives,
as well: Their DNA could inadvertently reveal a lot about you, too..
So remember before spitting into that tube: It’s not just personal, it’s familial.