Privacy Concern or Public Benefit? Police Access to Consumer DNA in Question

^{A new study suggests the public is not concerned about police probing consumer genetic databases.}

When police arrested the alleged Golden State Killer — a serial murderer, rapist and burglar who haunted California suburbs more than 30 years ago — they owed the victory to the budding direct-to-consumer (DTC) genetic-testing industry.

A family member of Joseph James DeAngelo, the former cop who’s now facing 13 counts of murder, had taken a DTC genetic test and uploaded the results to a third-party genealogy website. Although DeAngelo hadn’t provided any of his own information, police analyzed the database and succeeded in tying crime scene DNA to his family member, whose genetic data were publicly available.

It was a watershed moment, a first for law enforcement, which struck privacy advocates as alarming. Our podcast, Data Book, detailed the case and its ethical implications with the National Institutes of Health’s Christine Grady, Ph.D., M.S.N., in June — you can listen here or below. But there existed no watertight answers to the question of whether police should have access to consumer DNA.

>> READ: Forensic Genealogy Is Neat. Is It Ethical, Though?

Now, the public has lent its opinion: Yes. In a new study, researchers from the Center for Medical Ethics and Health Policy at the Baylor College of Medicine found that 79 percent of participants supported police searches of genetic websites that may identify a relative, as was the case in the DeAngelo investigation.

Of the 1,587 respondents, 62 percent supported the disclosure of DTC genetic-testing customer data to police and 65 percent approved of police creating fake profiles on genealogy websites.

When the crimes in question got uglier, the participants’ reaction grew stronger. Eighty percent supported these activities to identify suspects in violent crimes, 78 percent for those involved with crimes against kids and 77 percent for perpetrators in missing persons cases.

But just 39 percent backed these police practices in the case of nonviolent crimes.

GEDmatch, the website through which the alleged Golden State Killer was unmasked, has since updated its privacy policy to permit police to use the database in connection with homicide and sexual assault investigations.

Public opinion could play a more critical role in future discussions surrounding DTC genetic testing and privacy. But science has not examined the issue until this survey — a void that, combined with pressing policy questions, prodded researchers to explore the matter.

“Far from being a forensic anomaly, the public genetic search that led to the arrest of the Golden State Killer suspect is quickly on its way to becoming routine procedure,” the researchers noted, citing other recent examples. “What limits, if any, to place on police access to genetic genealogy databases must be thoughtfully considered and soon, with robust input from the public.”

Despite their results, Baylor researchers said the tide could change as people begin to better understand DTC genetic testing and its inherent risks.

Companies in this space may soon offer new services and technologies that expose consumers in unique ways. Police, meanwhile, could target the wrong suspect. And it’s possible that even now some third-party genealogy websites allow users to upload other people’s information.

“We may be comfortable requiring individuals who engage in the personal genetic landscape to accept the risk that law enforcement will search their data,” the authors wrote. “But those whose genetic identities are being shared online without their knowledge are not aware that they are participating in this landscape and so cannot be said to have accepted its risks.”

Finally, the study itself has limitations. Survey respondents were younger, reported higher rates of crime victimization in their families and had more links to law enforcement than the general population, according to the report.

Given all this, whether police should have access to voluntary consumer DNA databases remains a question. It could be decided by lawmakers, the courts or the companies themselves. The researchers, meanwhile, called for more analyses to better determine exactly where the public stands.

Get the best insights in healthcare analytics directly to your inbox.

Related

DTC Genetic-Testing Giants Throw Their Weight Behind Privacy

Podcast: Should Cops Have Access to Consumer DNA?

Handling the Headaches of At-Home Genetic Testing