Growing up, I was taught that it is not ladylike to spit. So, from that perspective alone, I have always been a little leery of DNA testing.
However, decorum aside, I have quite a few reservations about voluntarily handling over my DNA—the very essence of what makes me, me—to some faceless entities. Call me skeptical or even paranoid, but I just do not trust corporate and/or government bigwigs enough to believe that my DNA data will remain mine alone and that someone, somewhere is not making a buck off of all that information or using DNA in some big brotherly manner.
And it seems that I am not the only one wary about DNA and privacy. Here are several pieces on this very subject:
You probably wouldn’t hand out your social security number without having a pretty good idea of how that information was going to be used, right? That would be dumb. It’s extremely sensitive information. And yet, the consumer genetic testing market is booming thanks to people readily giving up another piece of their identity: their genetic code. (Read more here.)
AncestryDNA’s pitch to consumers is simple enough. For $99, the company will analyze a sample of your saliva and then send back information about your “ethnic mix.” While that promise may be scientifically dubious, it’s a relatively clear-cut proposal. Some, however, worry that the service might raise significant privacy concerns.
After surveying AncestryDNA’s terms and conditions, consumer protection attorney Joel Winston found a few issues that troubled him. As he noted in a Medium post last week, the agreement asserts that it grants the company “a perpetual, royalty-free, world-wide, transferable license to use your DNA.” …According to Winston, “With this single contractual provision, customers are granting Ancestry.com the broadest possible rights to own and exploit their genetic information.” (Read more here.)
If you could know whether you were likely to develop a debilitating, untreatable disease at age 50, would you want to? 23andMe is offering you that opportunity—but they’re not going to ask you that question. Not really.
23andMe has handed out genetic information like candy for over a decade without much care as to how their customers handle it. True, most of the time they’re selling pretty innocuous stuff…. Those genetic nuggets are easy to digest and often pretty fun. They probably have little to no impact on your daily life.
But now things are changing. The Food and Drug Administration just ruled that 23andMe—and by extension, other genetic testing companies—can sell you tests that determine your likelihood of something more serious than an unfortunate sneezing habit. Now they can tell you if you’re prone to developing Alzheimer’s or Parkinson’s disease, along with eight other disorders with genetic underpinnings. That’s great news for 23andMe, who have been fighting for years to sell customers this information. It just might not be such great news for you. (Read more here.)
Embedded in our genetic code is all kinds of sensitive data that could be compromising in the wrong hands. Without genetic privacy protections, the information stored in our genes might be used to discriminate against us or send us targeted ads. For these reasons, some have said we should skip out on consumer DNA tests if we value our privacy. Last week, after the FDA gave DNA testing company 23andMe the greenlight to offer consumers disease risk assessments, there was a new wave of warnings….
Let’s be clear here. 23andMe definitely is selling your data to third-party companies, research institutions and nonprofits. But it is not selling your genetic data to those entities in order for them to sell you things. It is selling de-identified, aggregate data for research, if you give them consent. (Read more here.)
Genetic testing promises a revolution in healthcare. With just a few swabs of saliva, diagnostics can provide an unprecedented look into a person’s family history and potential health risks. Within a decade, global sales of genetic tests are expected to hit $10 billion. Direct-to-consumer companies such as 23andMe and Genos have proven particularly popular, with tens of thousands of people purchasing at-home testing kits every year.
But the industry’s rapid growth rests on a dangerous delusion: that genetic data is kept private. Most people assume this sensitive information simply sits in a secure database, protected from hacks and misuse. (Read more here.)