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While the popularity of DNA test kits continues to grow, so does concerns regarding privacy. Testers need to be aware of how to keep their information safe and secure.
“Those direct to consumer testing companies are not health care providers. They’re not doctors, and because of that, they’re outside the health care system and they’re not required to comply with health privacy laws like HIPAA,” explains Mason Marks, a research scholar at NYU.
The companies in this business face very little regulation when it comes to how genetic information can be used. For each company, the fine print varies.
“They’ll often present this in their Terms of Service as an opportunity to participate in research funded by the National Institutes of Health, for example,” Marks says. “So, it suggests that there might be some kind of public health benefit. But often times, the companies will have a relationship with a pharmaceutical company.”
In a majority of cases, the information is made anonymous so it would be rather difficult to be tracked back to a specific person, even if someone obtained a genetic profile.
Steps do exist in order to keep information separate from the results in order to assure that third parties cannot obtain any information.
“Many of the companies do allow you to go through a process,” Marks explains. “You can request that they destroy your sample. It’s usually a saliva sample. You can request that they have it destroyed. You can request that they delete your information or you can often delete your account, and they say that will delete your information.”
As a result of lax regulations, it is uncertain how much information can be removed from the genetic profile.
“So, even though you’re deleting your information from your user profile and maybe from some of their servers, the data is still being stored somewhere within the company,” Marks warns.
The best way to prevent the misuse of information? Don’t provide that information to companies in the first place.
Through the company MyHeritage, users are able to delete their DNA reports and results from the website permanently and also can have their samples destroyed. MyHeritage never shares data with third-party groups.