Genetic testing can be empowering. Think of Oscar-winning actress and director Angelina Jolie. She famously underwent a double mastectomy after learning that she carried the BRCA1 gene mutation that elevated her chance of developing breast cancer. “My doctors estimated that I had an 87 percent risk of breast cancer,” Jolie wrote in a New York Times opinion piece.
Genetic testing can reveal a predisposition to a long list of diseases and conditions. But the very information that empowers the patient could also potentially be used against them.
While Jolie received word of her increased cancer risk from her doctors, home DNA test kits are available for as little as $99. Companies such as 23andMe provide you with ancestry or medical information—and then store all of the data collected about your genome.
And it’s not just genetic testing. Our personal information is being generated at a dizzying rate—all of it is owned by companies, not us. Each time you swipe a supermarket loyalty card, strap on a fitness band, “like” a comment or post on Facebook, or drive a vehicle outfitted with a GPS—you are generating a more detailed profile about yourself.
Can this personal data be used against you? It already is. Consider:
· A supermarket chain in Australia sold information about purchases to a health insurance company.
· Rental car companies use GPS to make sure that customers play by the rules.
· Companies are providing fitness bands to employees as part of their wellness plans.
The story about the supermarket chain was told by a panelist at the Privacy Identity Innovation 2014 (pii2014) conference held recently in Palo Alto, Calif. The insurance company looked at the data, and then hiked insurance premiums based on the purchase of an item that it considered a health risk. The sale of the information was done without the advanced knowledge of customers.
“Data collected without transparency should not be used against a person,” Shane Green, co-founder and CEO of Personal told pii2014 attendees.
But does disclosure matter, or is the point that data is being used against us?
As far back as 2004, rental car companies were using GPS to assure that customers stayed in specified geographical areas as outlined in the fine print of contracts. Violators were socked with exorbitant fees. Some smaller rental agencies continue the practice today.
There’s also the growing perk of companies handing out fitness bands by the thousands. Stories abound about employees being thrilled with the devices, and there has been no documented case of the collected information being used against workers who fail to increase fitness and decrease waistlines. But the potential exists. "Employers are increasingly calling the shots on how employees receive their benefits — and workers may be penalized or rewarded depending upon how they take care of themselves," wrote John F. Wasik in The Fiscal Times.
What’s a consumer to do? Erasing cookies doesn’t solve the problem, and neither does Do Not Track, as some companies fail to participate and others develop stealth cookies.