The BBC has published an article investigating how “off-the-shelf DNA tests” store user samples and whether or not the personal information is being sold to affiliated companies.
Genetic services, such as 23AndMe and Ancestry, may occasionally sell access to anonymous data to drug research firms. This is usually a scheme that users can opt in and out of at any time, although the terms vary between different companies.
Research director at the health law institute at the University of Alberta Tim Caulfield told the BBC: “People need to look carefully at privacy statements because often these firms are partnering with the pharmaceutical industry and people should be aware that is happening.”
“Once it has been aggregated and data is out there, it becomes difficult to get it back. And what happens if the firm goes bankrupt, what happens to all the DNA then?”
Once a single submits their sample, it is transported to a third-party laboratory for testing with a unique barcode attached. This barcode identifies the individual to the Pheramor team but none of the lab technicians.
It does say that personal information, such as email addresses, can be used for marketing purposes but again, users can opt out of this whenever they want.
A journalist from Wired published an article about the accuracy of DNA dating platforms in May, concluding that the level of scientific knowledge required to make accurate matches doesn’t yet exist.
Read more here.