DNA testing kits have been a popular gift to give. With the popularity, comes concern over privacy. What happens when you no longer want that information to be revealed and open for other people to see?
“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.
Marks says there's very little regulation on how these companies can use your genetic information. Additionally, the fine print varies from company to company.
"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 most cases, your information is made anonymous, so it would be difficult--though not impossible--to track back to you, even if big pharma gets your genetic profile.
Marks says there are steps you can take to remove your information and possibly keep it from being shared with third parties.
“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.”
However, because of loose regulations, it's unclear how much of your information will be removed.
“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.
Marks says the best way to prevent your information from being misused is to not provide it to companies in the first place.
MyHeritage responded when reached out to for a comment. They said users can delete their DNA results and reports permanently from their website and have their samples destroyed by contacting customer support via phone or e-mail. MyHeritage also says it never shares data with third-party researchers.
