For some of us, DNA testing can be a fun trip into our deep pasts. For others, like Sen. Elizabeth Warren, it can be a means to a political gambit.
Regardless of motive, there is clearly enough demand to drive the new industry of DNA testing. Companies like 23andMe and Ancestry make millions of dollars by giving consumers intimate looks into the deepest parts of themselves. There is no denying this can provide wonderful moments of self-discovery, but there is remarkable danger in handing out our most private information to biotech companies with unclear intentions.
Companies like Facebook and Google are remarkably unapologetic in how ravenously they gather every possible data point from our online presences. With a different social contract involved, DNA testing is an altogether different animal.
Most at-home testing kits will cost at least $100 and will require a sample of saliva. With the price tag, there is no internal red flag about privacy that we have all learned to apply for “free” services like social networks.
The reality is that we should be even more wary of the companies we send our DNA to than anyone else. While it is a little hyperbolic to say that we need to worry about these companies creating clones of us, there are dangers to giving up your DNA that can make other privacy scandals pale in comparison.
The biggest red flag is the utter lack of regulation keeping this burgeoning industry from doing whatever it wants with the DNA sent in by consumers. There is only one real piece of legislation, the Genetic Information Nondiscrimination Act of 2008 (GINA) that addresses employment discrimination more than the possibility of biotech companies taking advantage of consumers. There is a stipulation calling for informed consent forms which should include the known risks of participating in a project and the lengths to which confidentiality will be protected.
Jonah Baker | Argonaut
That is not nearly comprehensive nor recent enough to effectively protect the people that just want to find out more about their chemical makeup and history.
In the meantime, there are plenty of outlets that would love to pay 23andMe and other companies for your DNA. According to a CNBC report, more than 80 percent of 23andMe customers opt in to sharing their DNA for research purposes, which is currently limited to use for nonprofits and academia. This is contingent on the hope that each biotech company’s mission doesn’t change or that leadership doesn’t get desperate for extra cash and sells your most private information out for nefarious purposes.
Theranos is a great example of what goes wrong when a biotech company over-promises and puts consumers at risk as a result. Originally promising small and noninvasive blood tests on a wide scale, Theranos misled investors and consumers of the success of their endeavors. Thankfully, the company went out of business before any real harm could be done to the consumers that would have trusted their products without real understanding of implications for their personal data. Ancestry and 23andMe have sustained success for decades, making it unlikely they will fail as terribly, but more likely they will survive long enough to exploit many different opportunities offered by their growing DNA databanks.
Then there’s the problem of law enforcement. Surrendering your DNA to a company means that a subpoena for your information from law enforcement could allow for conclusions that wouldn’t be drawn otherwise within the confines of the law. And just like these can only guarantee so much of your confidentiality, they also cannot guarantee that your information can be kept out of the government’s hands.
There is plenty of potential for DNA testing, like a future where beneficially mutated individuals can contribute their DNA to provide cures that would otherwise be unattainable. We are not in that future yet.
Privacy is a large issue, and there is almost no indication that DNA testing companies won’t misuse DNA sent their way for otherwise unassuming purposes.
The only person truly in charge of your privacy is you. Is the risk of surrendering your most personal data worth a window into your ancestors’ pasts?
Jonah Baker can be reached at [email protected] or on Twitter @jonahpbaker