Do people have any real privacy rights when it comes to their DNA? Who should have the right to own or control information about your DNA?
A recent article in The Atlantic revealed that some DNA testing companies are now ready to test old-fashioned envelopes and stamps that people would lick to dampen the adhesive. Licking the adhesive would have deposited DNA that may still be preserved enough to test.
The companies can now sequence the DNA of your great grandmother or even a dead celebrity. The up side of this is that people will now be able to identify new relatives that they may never have known about before.
The downside is that people’s genetic privacy is increasingly becoming impaired. You don’t have to participate in DNA testing in order to be affected. Several DNA testing companies maintain public databases that are searchable by anyone — including the police. This can allow a person to be identified simply because a relative, even a distant one, has submitted a swab.
Indeed, this happened in the Golden State Killer case. Police in California claim to have matched crime scene DNA to a suspect because his third and fourth cousins took DNA tests. Those cousins’ tests were uploaded into a public database and the police were able to compare those tests with the crime scene DNA and ultimately extrapolate the identity of a suspect.
However impressive that seems, it’s crucial to remember that any DNA test could be subject to error. In the Golden State Killer case, where law enforcement had well-preserved DNA from the crime scene, the police originally picked the wrong man. They misidentified an innocent 73-year-old man in a nursing home as their suspect.
If our genetic information can be extrapolated from relatives’ DNA, we should all be concerned about how our genetic history could be used. This is true even when the DNA being tested is that of a dead relative or celebrity, because that DNA could reveal all sorts of private information. Many commercial DNA tests now check for genetic diseases and predispositions as well as extended familial relationships.
Do people have privacy rights over their DNA? In 2008, Congress passed the Genetic Information Nondiscrimination Act (GINA) to prevent employers and health insurers from using genetic information to discriminate.
Other than GINA, we essentially live in the Wild West of genetic information. With the information in publicly searchable databases, virtually anyone could use the information for virtually any reason. When the reason is law enforcement, we know there is a risk that innocent people could be drawn into criminal cases.