From TechCrunch: “GEDmatch, the DNA analysis site that police used to catch the so-called Golden State Killer, was pulled briefly offline on Sunday while its parent company investigated how its users’ DNA profile data apparently became available to law enforcement searches. The company confirmed Wednesday that the permissions change was caused by a breach.”
GEDmatch did not know for about three hours that it was hacked. The breach overrode consumers’ permissions for authorities to use their profiles in searches. This breach made available to police around 1 mio profiles previously not accessible by consumers’ explicite wishes.
I recommend the TedX Scranton talk by Matt Artz, here, who speaks about the safety of DNA tests. He highlights the banking on emotions when test kits are marketed, the lack of understanding about informed consent, and web tech breaches. Artz points out that there are protections in the areas of employment and health insurances but not for disability, life insurances, long term care insurance, and business employing less than 15 people. Worth your time to watch!
A Consumer Reports’ article entitled ‘Your genetic data isn’t safe‘ confirms what Artz said: “Still, privacy experts say there are some key concerns. One is that your genetic information could be used in underwriting insurance policies. It can’t be used for health insurance, thanks to the ACA, but—except in Florida where this practice was recently prohibited—it could theoretically be used to determine life, long-term care, or disability insurance plans.”
I wrote about my concerns for forensic genealogy before, here. I know that we want old, cold cases solved. Really, I want that too. If I didn’t, I would not have been doing this work for the past decade. However, if we are going to use forensic genealogy, it has to be done in a safe manner that protects people’s privacy, their identity, and their future rights.
Again from Consumer Reports: “A final important consideration is that when your genetic data becomes public, it’s not only revealing information about you. It also reveals information about blood relatives, who may or may not even be aware that you opted to share your genome with a DTC testing company. Clayton at Vanderbilt recommends that consumers take this into consideration when deciding whether to use a DTC genetic testing product.”
DTC stands for direct-to-consumer tests without the involvement of a health care provider or health insurance company in the process. I agree.