Does Genetic Data’s Wild West Need a Sheriff?
Genetic testing services have seen a marked user increase in the last several years: in 2017, the number of people in their genetic databases doubled1; in 2018 it surpassed 12 million people.
Today, in the United States, estimates suggest 1 in 25 adults1 has access to information about their genetic data. Access to this data can be useful on an individual level—for everything from filling in family trees to getting health information. But the more people that submit their data to these testing services, the more significant the findings are on a macro level. More data in the genetic database means genetic testing is more accurate and more powerful2.
Yaniv Erlich, Associate Professor of Computer Science at Columbia University, has been monitoring the implications of this growing volume of genetic data for over four years. In October, he led a study3 that suggests the growing amount of genetic data makes it easier to identify individuals even if they haven’t directly submitted their DNA to a genetic testing service.
Erlich says the ability to be easily identified would likely not be cause for concern, except for one important gap: although there are certain laws4 in place to help protect the use of genetic information, there is no governing body overseeing the collection and utilization of these genetic databases. The more data available, he says, the more important it is to implement regulation and oversight.
The Difference About DNA Databases
Most DNA testing services store personal identity data and genetic data in entirely separate computing environments to help ensure maximum security. Still, some studies indicate it’s possible to rematch5 part of the two sets of information to identify an individual’s DNA—but they must know some specific information like your zip code, gender, and birth date.
Even more cause for concern, however, is the implications for people who aren’t in the system. For most biometric databases out there—including fingerprint readers, facial or voice recognition—that person’s data must be in that database for the individual to be discovered. If a law enforcement runs your fingerprints and you’ve never submitted fingerprints, they can’t find you. DNA is different: A database of DNA data for a million people could possibly identify millions more people.
“It’s worth emphasizing,” Erlich says. “This is the uniqueness of DNA.”
Soon, nearly anyone in the U.S. of European descent could be identified by a DNA sample. While we haven’t yet hit that critical data mass, Erlich says when we do, there won’t be a way to unshare all of the DNA data.
DNA Data is Doing Good
The growing ability of this database to identify people who haven’t submitted to DNA testing seems to be engendering fears about genetic surveillance6—but Erlich’s research finds most people aren’t opposed to law enforcement using their genetic data for the greater good.
And that’s already happening, most famously in the April 2018 apprehension of the Golden State Killer, a serial murderer responsible for at least 13 deaths. Law enforcement’s break in the case8 came after a relative of the killer published her DNA test results on a public site.
There have been a whole host of positive outcomes thanks to DNA data even beyond aiding law enforcement. Stories abound of family reunions, from siblings separated9 at birth to Holocaust survivors10 discovering family they’d never known. And—thanks in part to the growing availability of data—some direct-to-consumer genetic tests are also FDA approved10 for testing specific health conditions like late onset Alzheimer’s and celiac disease.
“People are actually quite excited about the possibility that their own journey to understand their past can help humanity,” Erlich says.
The Case for a Governing Organization
Erlich says if that same data used to find the Golden State Killer were used in something like parking enforcement, he expects that people would be less enthused about the idea of sharing their DNA data.
“The question is how we can balance the power of law enforcement agencies, and put in some checks so they don’t use the same techniques they use to capture serious criminals for less important crimes,” Erlich says.
“We need to have clear policies about what police can and cannot do with crime scene data before they upload it to genetic genealogy databases.”
That could be an independent committee (or someone within the law enforcement agency) that could have the power to say yes or no when police seek to submit samples. Clear, hard-and-fast rules about what types of crimes allow law enforcement to search a database in the first place could be another option.
Beyond law enforcement, concerns abound11 that genetic databases might one day be used to determine certain policies and rates. And for some services, roughly 80 percent12 of consumers request that their data be tested for health issues—meaning a great deal of health data is already available.
With Governance, DNA Testing’s Future Is Bright
Still, Erlich is hopeful that the future of DNA testing won’t be overshadowed by fears of genetic surveillance. He says DNA allows people to take control of parts of their history that they’ve never had access to before—and rather than fear the future, he encourages people to consider the risks, take appropriate steps, and look forward to the most exciting parts of what DNA allows them to do.
“DNA is like a time capsule that your many different ancestors put together for you,” he says. “What we do is take the time capsule and convert it into some knowledge about where you came from, who is related to you, and how they are related to you.”
And if that knowledge can also help capture a serial killer, then as long as the checks are in place to ensure the data is used appropriately, the future looks positive.
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