Genetic Testing & Company Stories

BY ALEX HOLLOWAY – Would you rather know if you were predisposed to certain medical conditions, or would you rather remain in the dark?  The opportunity to raise this question is now a reality thanks to the new world of mail-in genetic testing. 23andMe and other genetic testing companies have created a quick and easy route to revealing people’s ancestry and health backgrounds by asking them to essentially spit in a plastic tube and mail it back to their labs.  At the price of $199 dollars, any participant can become more knowledgeable on what makes them unique as well as their potential health, but the real question is if it is as simple as it sounds.  

The basics behind genealogy sites are straightforward.  Participants purchase a kit, send in a saliva sample, wait for 3 weeks, then receive a link with a plethora of information about their genetic makeup.  They have the possibility to get insight into health predispositions, carrier status, traits, wellness, and ancestry.  Mail-in testing is a great way for people to figure out their past and what could be in their future.  Additionally, it is efficient as it requires no appointment or pain. The process sounds seamless, but it raises some concerns such as where the genetic data is stored and who has access to it.  

Most companies highlight security and privacy as a top priority to their consumers; however, the government recently proved that sometimes the companies do not have a choice but to hand over the information.  One DNA testing site, GEDmatch, began handing over user data, which allowed police to solve over 50 cold cases.  One of the most significant though, is the arrest made in the Golden State Killer case.  The DNA of the user was not that of the killer but of a family member; it narrowed down the suspects drastically and led to the arrest of Joseph DeAngelo.  Getting a killer off the street is a good thing though, right? Yes, but the potential of information getting released or sold is definitely there.  

In June of 2018, MyHeritage, a genealogy company experienced a breach in over 92 million of their accounts.  The breach was so serious, that it was called, “more dangerous than a credit card leak,” and for good reason.  In this case, the hackers only gathered the data, but its not believed to have ever been used. However, it was expected that the data could have been sold or held hostage for money.  A more pressing question is who they would sell the data to. Giovanni Vigna, a professor at UC Santa Barbara and owner of cybersecurity company Lastline, believes that insurance companies could be a major market.  If hackers were to sell data, such as DNA records, insurance companies could use them to determine rates, loans, and much more for the people they insure.     

Companies are striving to become more transparent in their regulations for providing genetic information to third parties.  For 23&Me kits, the company has a release form that can be signed and allows them to distribute their findings to outside sources, which can then be used for testing and research.  It is not required for participants to sign off on the release, but many will speed through the waivers and confirm the process without really ever even noticing. GEDmatch added a similar policy after users became concerned with how compliant the company was being with law enforcement.  GEDmatch’s new policy allows users to select whether or not they would like law enforcement to have access to their data if it was requested. Additionally, the company now requires that law enforcement get a warrant, or go to court in order to gain access to consumer’s data.

Genealogy companies harbor the potential to unravel far more than genetics or family lineages.  Their gathered data is no longer purely for the consumer, but instead information that many would be willing to bargain for.  Although companies continue to advance their security policies, users must be aware of the risks they are taking and think about not only learning of their past, but also what it could do to their future.        

Editor: Sherry Luo

Photography Source: https://www.samitivejhospitals.com/en/promotions/genetic-testing/