More than 2,000 immigrant children—some just toddlers—have been separated from their families and are now strewn across shelters in at least 16 states. With no clear end to the crisis, some commercial DNA testing companies are offering to help.
MyHeritage has offered 5,000 testing kits as an extension of their pro bono initiative to reunite adoptees with their biological families. And 23andMe entered the fray after prompting from California Representative Jackie Speier.
The announcements were immediately met with concern from bioethicists and lawyers.
“I think we should be very wary of any proposals to create a DNA database, even if the intentions are good,” Elizabeth Joh, professor of law at the University of California, Davis, says in an email. (See haunting pictures of where refugee children in the Middle East sleep.)
Questions abound—from privacy and logistics to whether such tests are necessary for reunification. We talked with experts in the field to clarify what such an effort would look like and lay out the pros and cons.
How does DNA matching work?
Your genetic fingerprint is a blend of DNA from your biological mom and dad. That means every gene in your body comes from one of your parents.
To help migrant families, parents and children would all provide samples of their genetic material. For 23andMe tests, that would require spitting in a tube; MyHeritage kits use a cheek swab. The companies then examine roughly 700,000 of the three billion basic units of genetic material that make up the human genome, explains Miguel Vilar, lead scientist for National Geographic’s Genographic Project.
For the standard ancestry tests these companies perform, they look through an individual's genes to identify the frequency of specific markers in their DNA that indicate matches with various ethnic groups. However, those results are not independently verified before delivery, nor do the companies have agreed upon standards for conducting ancestry tests, Sheldon Krimsky, a professor at Tufts University and author of Genetic Justice: DNA Data Banks, Criminal Investigations & Civil Liberties, says in an interview with Tufts Now. As many reports have shown, different companies can yield different results.
But unlike ancestry tests, identifying direct relations can be done with a fairly high degree of accuracy, and matching could be completed in several different ways. The most likely method is to directly compare each individual’s DNA. The results could be loaded into a database that searches for long similarities in the alphabet soup. When the test yields a match, mom or dad could then be contacted for a long overdue reunion.
Such tests are roughly 99.9 percent accurate for carefully collected samples from direct relations, Vilar says: “I think the science would be doable.”
But the situation, he says, is far more complex.
What are the issues with privacy and consent?
One of the first issues with the test is consent. For minors, medical privacy rules may prevent sampling unless each child is designated a legal guardian or representative, which is obviously problematic in this case. And for the adults, even if they give consent, it would effectively be offered under duress, since they are currently being detained, says Ada Hamosh, clinical director of the McKusick-Nathans Institute of Genetic Medicine at Johns Hopkins University.
Then there’s the issue of helping the families understand the magnitude of turning over their DNA.
“The people who are being offered this service largely aren't English speaking, and many of them—like the general public of most of the U.S.—don't have the education to understand exactly what the test is,” says Debra Mathews, associate professor at Johns Hopkins Berman Institute of Bioethics.
Under current law, once genetic data are uploaded to a company database, police can seek out that information through the courts.
“If law enforcement has a valid court order or a subpoena, they will be able to get access,” Mathews says. And as the recent genetic tracing of the Golden State Killer showed, accidental or intentional release of your genetic makeup can place you and your relatives at the mercy of criminal investigations.
“Your DNA does not belong exclusively to you,” she says. “You share it with all your genetic relatives to varying degrees.”
To be clear, that particular case was cracked using a publicly available genetic database GEDmatch—whereas both 23andMe and MyHeritage are private databases. And to the companies’ credit, both 23andMe and MyHeritage are working to address the need for privacy protections.
23andMe plans to offer their services “through non-profit legal aid organizations representing these families,” they write in an emailed statement to National Geographic. “We are well aware that genetic data contains highly personal information and we want to ensure that it is handled confidentially and with the consent of anyone tested.” They note that the legal representatives can ensure the data are only used for reunification, adding on Twitter that they have contacted the nonprofit RAICES Texas to assist in the effort.
“I think there are clearly many sensitivities involved in something like this,” says Rafi Mendelsohn, a MyHeritage spokesperson. As such, he says, their customer service will be available in 42 languages to provide support for the reunification efforts.
Though MyHeritage is looking into working with “relevant organizations,” Mendelsohn says, the process for migrant families will likely be similar to that for their other customers: Data will be uploaded into the MyHeritage database, and the saliva samples will be stored.
“The DNA is owned by the user, and they have complete control over what happens to the DNA,” says Mendelsohn. The company does not sell or share this genetic information, he says, and families can ask to have their saliva samples and data destroyed.
Still, the need for extra safeguards for these vulnerable families remains high, Krimsky tells National Geographic. He would advise any effort to build databases for the families include “very strict privacy considerations that go well beyond what [the companies] put out in their privacy memos.”
What about the logistics?
Beyond privacy concerns, the basic logistics of the effort are extremely complex, says Krimsky.
“This is an enormous undertaking. You'd have to have DNA profiles of all of the adults, DNA profiles of all of the children, and you'd have to do very careful comparisons,” he says.
And unless the companies can push all these samples to the front of the line, says Genographic’s Vilar, processing could take weeks. Currently, the Genographic team has no plans to pitch into the effort. Vilar acknowledges the importance of reuniting families, but he says that the logistics are too complicated to handle with Genographic's limited staff.
Having multiple companies attempting to lend a hand could also pose a challenge. DNA kit companies often sequence slightly different sections of genes, which could add a little uncertainty to the results. “You'd still be comparing apples,” says Vilar. “But you would maybe be comparing a Macintosh apple to a Gala apple.” (Here's why siblings can get different results from a DNA test.)
Even more challenging is meshing the two different databases. All of the efforts are in their earliest stages, so it’s unclear how the information might be shared, explains MyHeritage’s Mendelsohn. “I'm not sure if it would be fair for me to answer that at this point,” he says.
But all of this meticulous work takes time—something these families don’t have.
“Every single day apart is doing traumatic damage, potentially permanent, to these children,” says Hamosh.
Is genetic testing even necessary?
Even if families are reunited using their DNA, the tests could have unintended consequences. For one, says Hamosh, there’s the nearly inevitable case that some kids will discover they’re not biologically related to a parent that raised them. That turns out to be true in 1 to 10 percent of prenatal testing completed in the U.S.
“There’s no reason to do this to the kids, the fathers, [or] the mother,” says Hamosh. (Refugee children in Greece are currently facing a mental health crisis.)
Sometimes genetic tests are required to reunite families. In the 1990s, Krimsky was a chair on a committee for the American Association for the Advancement of Science that established a team of forensic geneticists to help the Grandmothers of the Plaza del Mayo. This organization was locating children who had been kidnapped during the Argentine military dictatorship, which ruled between 1976 and 1983, and matching them with grandparents. In that case, he says, DNA was necessary to reunite long-estranged family members, some of whom were born to imprisoned mothers and had never met their relatives.
In the current situation, he says, it’s “not clear to me that the need exists.” Many of the children should be old enough to give their parent’s names for reuniting, provided good enough records exist of the family’s whereabouts. Currently, though, the government's process for reuniting children and parents is chaotic, and for the youngest kids pulled from their parents, DNA may be their only option.
In that case, “there would have to be very thoughtful guidelines put in place to protect this incredibly vulnerable population in an incredibly vulnerable situation,” Mathews says. “There aren't many more vulnerable populations than this at this point.”