DNA, Data, and Dollars
I am adopted and thus I have often thought of doing a DNA test. I really do not know much about my ethnicity, but every time the commercial is on television or the radio, this thought passes through my head; should I buy a DNA kit? If so, which one should I choose?
I should thank my job in cybersecurity which has shown me the lack of security controls around data and has kept me from the actual purchase. But the commercials are tempting, especially because I watch them.
However, it is not only the lack of security controls around the data, but the data itself which has prevented me from seriously considering DNA testing. Your genetic code, including mutation patterns which make the unique you, become available with just a swab of your cheek and some spit. The full sequence of your DNA, which connects you to generations that have come before you, become available to you, and the genetic testing company. We are not just talking about email addresses, first and last names and your social security number, but real personal and sensitive identifying information.
What do these companies do with your data?
First, many companies well run and single nucleotide polymorphism known as SNP on your DNA. Companies will run thousands of markers, although only hundreds of markers are actually needed for your genealogy. So what about the other markers that were not given to you? Well, if you only requested genealogy, then all you will receive is a genealogy report. Health markers, for example, will not be shared. If your genetic code shows a serious disease that you have the potential to develop later in life, the company is under no obligation to reveal it to you.
While it seems as if the data is yours, it actually is not and here is why. The terms and conditions that people click agree to, allows consent for storing and processing your personal information. Consent to store and process your personal information will allow a company to take the thousand markers that they ran against your DNA, anonymize the data and sell it for “scientific research”.
Scientific research may be a pharmaceutical company looking to cure a disease and they have found that people from a certain population have a genetic marker which predisposes them to a disease. Being able to buy the data from genetic testing companies easily allows them a large pool of information of people who have the disease and people who do not. The pharmaceutical company now has information in weeks as opposed to years.
There is a saying today that data is the new oil. While some have disputed data being the new oil, your data is certainly being mined, producing revenue and it is very valuable. Yet, we are paying companies to gather data on us and then turn around and sell our data. Many of these companies gather additional information, which we willing give them about health and lifestyle to help create a better digital you. What the genetic companies are actually doing, is gathering more information about you and selling a better set of data tracks based not only on genetic information, but with a psychological profile.
As digital consumers, we often click right through the terms and agreement, but this is one area that we need to stop before we click and truly understand what we are consenting to before we give our DNA away. I find it ironic that in a day that data is so valuable, we pay a company that gathers our most sensitive data, that then will go and sell your information over and over again. It is not just double dipping; these genetic testing companies have the ability to digitize your genetic code while throwing your sample away.
I believe we are just at the beginning of a whole new social experiment. We are not on a defined path and we do not know yet where this path will take us. But what we do know, is that recently there was an arrest of the Golden State Killer based on an open-source genetic database. A family profile was created which led the investigators to the suspect. The traditional methods of police work took over thirty years, and yet a discarded DNA sample took only four months. It is difficult to argue the benefits of DNA, but I fear the price tag will be very high in the end.
If companies have not been able to protect our data including personal identifying information. Can you imagine what they will do with the data that makes the digital genetic you? Wow, talk about being safely Connected.