The recent arrest of the Golden State Killer raised questions about rights to genetic data. Now, bioethicists from the U.S.'s National Institutes of Health are weighing in on the budding debate.
The case raises questions about when genetic data can be used and whether consumers understand the rights they hand over to databases, Benjamin Berkman, Wynter Miller and Christine Grady, researchers with the institute also known as NIH, wrote in an editorial published May 28 in the medical journal Annals of Internal Medicine.
A dozen murders and 50 rapes over a decade starting in the 1960s have been attributed to the Golden State Killer, also known as the East Area Rapist and the Original Night Stalker. The nature of his crimes meant he left a significant DNA trail in his wake, years before there was technology to bring those various cases together.
With the arrival of DNA sequencing tools in the 1990s, authorities from Sacramento to Santa Barbara were able to link up the dozens of cases. And on April 24, 2018, California authorities arrested Joseph James DeAngelo, the 72-year-old suspect they traced through his distant relative's DNA, shared on the public website GEDMatch.
23andMe Inc. and Ancestry.com DNA LLC, the giants of direct-to-consumer, or DTC, genetic testing space, have both said they would not work with law enforcement to share user data.
However, there are few avenues for those companies if authorities decide to issue a subpoena, Marcus Christian, a lawyer on cybersecurity and data privacy with Mayer Brown, said in an earlier interview.
This is the question now emerging: Should consumers expect their data to remain private?
Courts have allowed law enforcement to test abandoned DNA samples at crime scenes such as hair or cigarette butts, the NIH researchers said, writing that data submitted to genealogical companies could also be considered "abandoned" — that is, voluntarily uploaded into commercial databases.
But according to Mayer Brown lawyer Christian, whether users understand that they sign the data over is another question. We very rarely read the fine print, he added.
"Whether they [the consumers] are aware that their data are subject to police collection is, legally, irrelevant." Berkman, Miller and Grady wrote, adding that the legal understanding of this data could be evolving. "Notwithstanding the clarity of the law, it is questionable whether it is good social policy to consider the uploading of genealogic data the same as abandoning DNA in a public space."
Murder cases opens door to more
Forensic uses of consumer genetic data could become more prominent now that this door is open, particularly in "compelling" cases, Christian said.
Arthur Caplan, a bioethicist with NYU School of Medicine and founder of the university medical center's medical ethics division, sees a slippery slope ahead.
"There are a lot of people who would like to be looking around in databases," he said in an interview, listing illegal immigration and fraud cases as other potential uses, necessitating more legal limits.
Reliability of DNA samples can be a challenge, both for interpreting a person's own information or stacking it up against the population as a whole.
"Existing biases in the criminal justice system suggest that forensic databases disproportionately contain DNA from certain racial/ethnic and geographic groups," Berkman, Miller and Grady said in the editorial, adding that using those biased databases in forensic cases might exacerbate certain inequalities.
Forensic genealogy should be used as an investigative tool rather than a primary source in criminal cases, the NIH researchers concluded. Likewise, justice concerns might warrant limiting criminal genealogy searching to cold cases where other avenues have failed, they added.
"Authorities apparently are reluctant to admit that they use forensic DNA searching, despite the fact that most states do so," Berkman, Miller and Grady said. "If law enforcement is using this technology, the adoption of formalized standards and mechanisms of accountability is appropriate."
