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Protecting Your DNA And Profiting Too
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As technology advances, DNA testing has become easier, faster, and cheaper. Which has opened up a lot of doors for companies to not only offer DNA testing for medical or forensic purposes but for ‘entertainment’ purposes as well. Well-known sites such as Ancestry.com and 23andMe.com and others are now buzzing with activity as there are many that are willing to pay the price to learn about their ancestors, how they should be living based on their genetics, what their life expectancy is, and even sites that offer customized wines based on your genetics.
What most are not realizing though is that the price is more than just a monetary value. Sites that collect DNA information are oftentimes scarily adept at also utilizing that information for a whole host of other uses. Most have contracts with other companies or third party suppliers that they sell, loan, or give out your DNA information to. These companies claim to use your information for good, mainly research to test for all kinds of diseases or gene markers for certain ailments such as Alzheimer’s.
For instance, Ancestry, openly admitted that they share information with Google’s Calico, and 23andMe has partnerships with Pfizer and Genentech. Not to mention that both companies have further partnerships for many services such as business analytics and lab work and those companies have access to your DNA information as well. Unfortunately, the names of all these companies are not readily available to consumers online and, when asked, some companies said it was because no one asked for it. This is somewhat troubling as these companies are getting information from you and you don’t even know who they are.
Further reason for concern is the policy of ownership once a company has your DNA information. Ancestry recently changed their policy to state that it “does not claim any ownership rights in the DNA that is submitted for testing” but that doesn’t mean that every company does the same. In the same privacy policy though states that even though they don’t claim ownership over your DNA they can still basically use that DNA sample you sent them however they want – and you’re agreeing to it when you sign the Terms and Conditions and Privacy Policy pages. Ancestry claims to need that consent because they have to send samples to a third party lab for testing but that doesn’t mean that there is anything stopping them from using it for other purposes, and they can do so legally. Even if it isn’t morally right.
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Why You Should Protect Yourself
So why is it such a big deal to protect your DNA information? Well, would you give your social security number to just anyone that asked for it? No, you wouldn’t, because you consider that highly sensitive information that doesn’t need to be given out. It is something that can identify and define you and connects you to many different things and people. Your genetic information is the same – when companies sell your information to third parties they state that they leave out any ‘identifying information’ but if they did so they wouldn’t be able to sell your genetic information at all. People have been correctly identified by only their genetic markers and DNA without any other ‘identifying information’ available.
Another point to consider is that if your genetic information is sold to say, insurance companies, then they can use that information against you to increase or completely deny your insurance coverage. Depending on the kind of markers that you have, they might state that you are ‘predisposed’ for a certain disease and thus have the basis for denying you coverage or at least significantly increasing your premiums. Also, if asked on a doctor’s or insurance’s questionnaire whether you’ve ever taken a genetic test, you must tell them if you have. Not revealing this information to insurance companies can count as fraud and get you in a lot of trouble.
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How To Protect Yourself
At this point, it seems that the best way to stay protected is to not share your information with genetic testing sites to begin with. Unless you’ve read the entire legalese of the Privacy Policy and are all right with the company using your data, staying away is the best practice. The future might potentially hold better ways to protect your DNA data without it being used without your knowledge. There are also already certain companies that are trying to turn the tables on big companies by allowing consumers to monetize their own DNA data with new technology.
This might become more common in the future, as people become more aware of the vast amount of research and use that their personal DNA data is being utilized for and become increasingly frustrated. The way the current system is set up, if a company sells your DNA data and it ends up being the key to some new cure or treatment or pharmaceutical breakthrough, you would profit exactly zero from that while the company would profit handsomely. Changing that is becoming one of the ways that consumers can take control of their very personal data once again.
DNA testing has only recently been expanded and improved and it has given rise to many companies that are using it to make a profit. But that profit has come at the expense of many a consumer’s loss of what happens to their information once it is taken in by the company. Use for research, development of pharmaceuticals, and many other kinds of studies makes all this DNA data very profitable for companies, so why shouldn’t it be for the consumer that provided it in the first place? Although privacy policies are full of loopholes when it comes to protecting a consumer, the consumer can take their data into their own hands and choose what to do with it by way of new technologies that are allowing the consumer to monetize their own DNA and choose what to do with it. Hopefully, more are enlightened as to the extent that companies are abusing DNA data and will create an environment for change.
