how governments are using babies’ genes to investigate their parents
In the 1997 movie Gattaca, a not so subtle critique of eugenics and a warning against the many pitfalls of designer babies, envisioned a world in which your genes determine your life. If you had a genetic disease or propensity to develop some sort of illness or limitation, you would be considered an “in-valid,” and the best you could hope for was a life of menial work in service of the ambitions of those with the foresight to create children using IVF and genetic editing. Given how much your DNA data reveals, it warns, imagine just how horribly it could be abused.
Now, thankfully, any effort to design a perfect child would be an exercise in futility, so we don’t have to worry about a future like Gattaca. But that doesn’t mean our genetic results couldn’t be used in ways we’ve never anticipated. Case in point, a standard heel prick test meant to identify certain genetic disorders in newborns is now being used by police in New Jersey and California to find match for samples from crime scenes. As you can guess, lawyers and privacy advocates are very concerned and are desperate to close this legal Pandora’s box.
Essentially, there are three major problems with using genetic data collected from newborns to solve crimes. First and foremost is the big question of whether the use of this data is a violation of due process, as a prosecutor decided in one case in California. Just like police can’t just come to your house and search every nook and cranny “just in case you committed a crime” because you’re assumed innocent until proven guilty, they shouldn’t be able to get your DNA for testing when they run out of leads, no matter how indirectly.
And this brings us to the second problem. If you can casually collect newborns’ genetic data for a surveillance system, generation after generations will be caught in a massive library which will allow you to track entire families for centuries on a whim due to the clear similarities of genes of blood relatives. It’s exactly what China’s sprawling effort to create the ultimate totalitarian surveillance state sees as its crowning achievement: mandatory DNA collection of every citizen across the country, and precisely how this effort was justified to the public.
Third, and finally, if there are no protections against abusing genetic data from newborns, a lot of parents may opt out of this testing with serious consequences to their children. Without an early warning, some genetic conditions could manifest themselves as a surprise, instead of just being avoided. This would lead to an increase in mortality and disability among children, which the heel prick test was extremely successful in driving down, improving quality of lives for tens of millions over the last half century in the process.
Ultimately, this dilemma comes down to the calculus between privacy and safety. We want to see crimes solved and criminals punished, but the only way to solve every crime is to live in a totalitarian panopticon where investigators have access to every single piece of data about you on a whim, from your texts to your genes. At the same time, taking away people’s rights in the name of security and safety is how every authoritarian regime justifies its numerous abuses of power, which is, unsurprisingly, extremely unpopular.
Finding that balance isn’t easy, but that’s exactly what needs to be done because the last thing anyone who values freedom or wants actual rights should accept is a legal framework in which data needed by doctors is handed off to law enforcement to track generation after generation of families just in case someone commits a crime, and the database doesn’t have a convenient match. Given a taste for this kind power, there’s no telling to what else may be demanded of us in the name of “catching the bad guys.”