Monday, April 22, 2019

What Kinds of Warnings Should People Get Before Sharing Their Genetic Data?

You Share Your Genetic Data at Your Own Risk

But how can we better inform people about those risks?

This article is part of Futuense, a partnership of Slate, New America, and Arizona State University. On March 20, Future Tense will host an event in Washington, D.C., about how law enforcement is using genetic genealogy—thanks to consumer DNA testing—to solve crime. For more information and to RSVP, visit the New America website.re T

After more than a decade of work, the Human Genome Project produced the first complete sequence of the human genome in 2001. Although hard to imagine at that moment, two decades of profound technological improvements mean that it now takes just days to generate genomic data. Easy sequencing has pushed genomic data out of the lab and into people’s lives in fascinating ways. Take the proliferation of services like 23andMe that analyze your genetic information, and tell you about your ancestry, and perhaps help you discover unknown relatives who have also uploaded data.

While the ability to generate massive amounts of genomic data presents amazing, novel opportunities, like discovering the underlying genetic cause of a rare disease, it has also led to unexpected and ethically fraught uses. One such case is the forensic use of genealogy data. Criminal investigators have long used DNA evidence as part of their arsenal of tools, analyzing samples collected at a crime scene to see whether there is a match with someone in an established forensic database. But DNA found at a crime scene is only helpful if that potential suspect is already in the right database. Forensic DNA data is currently gathered into an uneven patchwork of state- and federal-level databases. (Some have proposed the potentially effective but controversial idea to build a universal database.)

In 2018, investigators tried a new approach: publicly available genetic genealogy data. By comparing crime scene DNA to the data in GEDmatch, one of these vast genealogy databases, investigators can identify relatives of a potential suspect and can then use this information to point them towards an actual target. It’s like finding a needle in a haystack when you know which corner of the haystack to search. In April 2018, police used this technique to track down the Golden State Killer, who was suspected of perpetrating a notorious series of unsolved rapes and murders in the 1970s. Other police departments have quickly followed suit, using this powerful tool to solve a series of cold cases.

This sudden adoption of genealogy data as a forensic resource raises a number of ethical questions. Studies demonstrate that the public is very concerned about genetic privacy, and some might not be comfortable with letting authorities access their data. People also worry about the potential use of their genetic information to discriminate—for example, to deny them certain kinds of insurance coverage. Concerns have also been raised about whether people would be comfortable unwittingly implicating a relative—even a third cousin they haven’t met—in a crime. On a broader level, scholars have raised the possibility that expanded forensic use of DNA analysis could exacerbate existing biases in the criminal justice system.

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