By Nicole Martin, forbes.com
In the past couple of years, genetic-testing companies like Ancestry and 23andMe have become popular for finding out family history and DNA information. They make for great gifts for family members and it’s a very attractive pitch to see “where you came from.” However, do you know where that information is being used and stored?
More than 12 million Americans have sent in their DNA to be analyzed to companies like 23andMe and AncestryDNA. The spit-in-tube DNA you send in is anonymized and used for genetic drug research and both sites have been selling the data to third-party companies, like P&G Beauty and Pepto-Bismol, and universities, like The University of Chicago, for some time. In fact, just last week major pharmaceutical giant, GlaxoSmithKline, announced a $300 million deal with 23andMe. The deal entails that they can use the data to analyze the stored sample, investigate new drugs to develop and genetic data for how patients are selected for clinical trials. Both companies say this is not without consent.
When you sign up to share your DNA with Ancestry, you opt-in for “informed consent research.” However, you have the ability to opt out of this when you first agree to the service. Both 23andMe and Ancestry said that they will not share genetic information freely, without a court order, but people are welcome to share the information online themselves sometimes in order to find lost relatives or biological parents.
Scientists use the data to learn more about genetics and various conditions and diseases in hopes to find cures and treatments.
“We all have some disease or health issue that we care about. 23andMe has created a research platform to enable interested customers to participate in research — to not wait for solutions to appear, but for people to come together and make discoveries happen,” 23andMe CEO Anne Wojcicki wrote in a letter to customers after the deal with GlaxoSmithKline was announced.
Law enforcement can also obtain your DNA data with a court order. In fact, they recently caught The Golden State Killer by comparing online stored DNA after 32 years at large. Investigators used a DNA-sharing website similar to 23andMe called GEDmatch and found a distant relative of the accused who had used the service. This small data sample was enough to find and convict the rapist and murderer.
All of this collected data means is that your privacy could be at risk when it comes to your genetic makeup information. Leaks are common in the data world and a DNA leak would be much worse than a credit leak because simply, you cannot change your DNA. If leaked, this data could cause people to be genetically discriminated against by employers, insurance companies, banks, etc. Another possibility is that people could pay an access to see the leaked data, just as people can pay to see a person’s background. Since there is no real established precedent for DNA data, there are many issues that could come if your data is leaked and no laws to truly protect you at the moment.
If you are uncomfortable with your DNA being sold to drug research or the possibility of a data leak, you can delete your DNA test results. Both sites have a step-by-step on deleting the data on their website.