Our DNA contains a tremendous amount of sensitive, personal information. Not only about us, but about our family members. It can tell us who we’re related to, whether we have genetic disorders and even how likely we are to get certain cancers.
According to one study, 90% of white Americans will soon be genetically traceable because a family member has uploaded their DNA sample to a consumer genealogy database like 23andMe or Ancestry.com. And, consumer genealogy kits are being heavily marketed to People of Color.
Even more common, perhaps, than consumer genealogy, is newborn genetic screening. This involves taking a small amount of blood from each infant and using it to check for genetic irregularities. Almost 1 in 300 babies have been found to have a genetic disorder, and knowing that can allow treatment.
Police are increasingly using genetic genealogy databases to compare suspect DNA with crime scene DNA. Typically, this is done without a warrant. It does not require the suspect to have submitted a DNA sample – a couple of relatives’ samples are enough.
For example, in 2018 the police used a consumer genealogy database to track down relatives of the suspect in the Golden State Killer cases in California. This process, which is called investigative genetic genealogy or IGC, has been used in at least 200 criminal investigations nationwide.
Yet this has not always been laudable. According to the ACLU, police have lied to people to get their DNA in order to finger one of their relatives. Now, the police are beginning to access newborns’ blood samples without warrants in order to use them for IGC.
If we allow the police to access the DNA taken from newborns for health purposes, and we allow it without a warrant, we are essentially telling law enforcement they can access anyone’s DNA for investigative purposes.
Is that what we want? Do we want our healthcare databases to become evidence? Do we want the government to have access to information about what possible disabilities we are prone to, or our likely recovery from a disease?
Are our genes an open book to government actors simply because a relative may (or may not) have committed a crime?
Privacy law is changing, but there is no national policy prohibiting law enforcement from raiding newborn DNA databases for their investigations. The ACLU says that a quarter of the states have no policy on this, while almost a third actually permit access to newborn DNA in some circumstances.
Our genetics should not be a weapon to be used against us, or a treasure trove of free data for the government.