Genetics and Privacy: Part 1
Ancestry Testing and Forensics
“When a loved one is a victim of a violent crime, families want answers … your help can provide the missing link.”
The company is the oldest DNA ancestry testing service, but not the largest. Evidently they hope to increase their database by incorporating data generated by other companies (“You don’t have to buy anything”). The publicity may be a gamble, but it has already raised the brand’s profile.
Strangely, FamilyTreeDNA, under public pressure, had earlier seemed to back away from its previous decision to allow the FBI essentially unfettered access to its DNA database. Elizabeth Joh concluded her report at Slate (March 29), headlined A Consumer DNA Testing Company’s Alarming New Marketing Pivot:
These are urgent questions about the proper balance between privacy and law enforcement and individual and familial rights. Yet it is a private company making these policy choices, changing the conversation, and shaping its terms. Few would respond well to the question: “Join us as a genetic informant!” But many will likely be moved to “help bring closure to families and victims.” Nor should we forget that while contributors may feel altruistic, the company has many motives. Although uploading your genetic file is free, you can “unlock” all of the company’s features for only $19.
Slate deserves a tip of the hat for a number of other useful, if ultimately depressing, pieces:
- You Share Your Genetic Data at Your Own Risk (March 15)
But how can we better inform people about those risks?
- Criminal Suspects Deserve Genetic Privacy, Too (March 18)
The conversation over police uploading suspects’ DNA to online databases is missing something important.
- The U.S. May Soon Have a De Facto National DNA Database (March 19)
We need to close the loopholes that allow law enforcement to take advantage of consumer genetics.
- Your At-Home DNA Test Could Crack a Cold Case (March 20)
An interesting recorded discussion, including a police officer, a civil-liberties lawyer and an investigative journalist; an odd glitch means the video starts at 26:30 (showing the actual beginning).
Legally, FamilyTreeDNA may be within its rights, since few of their customers are likely to make an active request not to participate. According to New Scientist, Europeans are “automatically opted out of matching with law-enforcement agencies’ DNA samples” but US citizens are not.
So far, neither of the industry leaders is following suit. 23andMe actively resists government requests for their data, and has not yet complied with any. Ancestry has responded to seven requests, all in cases of fraud, such as identity theft, and none for genetic data.
DNA ancestry testing clearly fascinates a lot of people, and entrepreneurs are doing their best to expand the market. MyHeritage, which has the third-largest database, is now offering to test envelopes for possible DNA from remnants of saliva, but only from dead people. Who may, of course be the ancestors of living people – or even worse, not. If your grandpa is not your grandpa, do you really want to know? What if your great-grandfather were Jack the Ripper? Scientists have fingered a suspect for the 1888 murders, though other experts remain skeptical.
Much more significantly in terms of the law and public welfare, a 38-year-old case has apparently been solved with the assistance of Parabon Snapshot, previously known as Parabon Nanolabs. Parabon was originally launched to monetize analysis of DNA samples that predicted what the person might look like. The goal, of course, was to sell that information to police. The company has since incorporated “genetic genealogy” and other analytic tools, with specifically forensic aims:
Snapshot is a cutting-edge forensic DNA analysis service that provides a variety of tools for solving hard cases quickly [Genetic Genealogy, DNA Phenotyping and Kinship Inference]. Snapshot is ideal for generating investigative leads, narrowing suspect lists, and solving human remains cases, without wasting time and money chasing false leads.
Technological skepticism is still in order. DNA samples are still subject to risks of contamination and/or human error. The Smithsonian compares it to “The Myth of Fingerprints” in an interesting analysis of the historical background. Juries are sometimes becoming dubious of the accuracy of DNA evidence, especially (as even The New York Times has noticed) “in minority communities where relationships with law enforcement have been strained.” Most recently, there was the scandal of the “race-biased dragnet” in Queens, which has also led to questions about both police coercion and the validity of DNA evidence.
Privacy and the Law
Remarkably, DNA ancestry searches can now identify most Americans of European descent. Forensic databases, however, have long been criticized as racialized in the opposite direction; arrests in California still show dramatic racial disparities, even as total arrests have dropped; prison populations reflect much higher proportions of the black and hispanic populations than white.
The cumulative effort of this blending of ancestry testing with criminal justice is that genetic privacy is under siege. Some public education is happening, as journalists investigate, sometimes writing about their own experiences. The lawsuit brought on behalf of the Center for Genetics and Society et al. to make California follow its own law about forensic data is continuing. But the general impression is that our society is slipping heedlessly in the direction of what Supreme Court Justice Antonin Scalia (joined by Justices Kagan, Bader Ginsburg and Sotomayor) foresaw in 2013, when the court upheld Maryland’s DNA law:
Today’s judgment will, to be sure, have the beneficial effect of solving more crimes; then again, so would the taking of DNA samples from anyone who flies on an airplane (surely the Transportation Security Administration needs to know the ‘identity’ of the flying public), applies for a driver’s license, or attends a public school. Perhaps the construction of such a genetic panopticon is wise. But I doubt that the proud men who wrote the charter of our liberties would have been so eager to open their mouths for royal inspection.
Read on for more about privacy concerns over the growth of both DNA testing industry investments and genetic databases in Genetics and Privacy: Part 2