DNA Tests on Separated Migrant Children Raise Privacy Issues

July 6, 2018, 2:31 PM UTC

The Trump administration’s decision to use DNA testing to help reunite children separated from their parents at the Mexican border is sparking concerns among privacy advocates about how data will be used.

The Department of Health and Human Services is analyzing the DNA of some of the nearly 3,000 separated children in U.S. custody, Health and Human Services Secretary Alex Azar said Thursday in a conference call with reporters. The agency is also testing adults who claim to be a child’s parent to verify familial relationships.

Typically, documents such as birth certificates are used to verify kinship claims, according to HHS. But DNA verification is being used instead to comply with a court order to reunite children up to age 4 with families by July 10, and children ages 5 to 17 by July 26.

“There’s just not a lot of oversight of what the government does with genetic data, even when we’re talking about U.S. citizens,” said Jordan Reimschisel, a research assistant at the Mercatus Center who has studied and written about genetic privacy. “We just don’t know what they could and will do with the data.”

Potential concerns raised by Reimschisel and other privacy advocates include government surveillance of migrant families, or using the health information gleaned from DNA tests to deny access to services in the future. There are also concerns that DNA samples from children won’t be obtained with proper consent.

‘Zero Tolerance’

In the aftermath of mass separations of families under the Trump administration’s zero-tolerance border policy, DNA testing companies including 23andMe Inc. and Thermo Fisher Scientific Inc. have offered their services to help match children to their families. The suggestion was supported by members of Congress including Representative Jackie Speier, a Democrat from California, as a potential method to quickly and accurately match kids with their families.

“DNA samples can be taken from all those in custody, with a commitment to respect their privacy, to ensure that these children are not made orphans by the American government,” Speier wrote in a statement on her Facebook page.

But Jennifer K. Wagner, the associate director of bioethics research at the Geisinger Institute, said that while there could be a responsible way to reunite families using DNA, key details like which genetic marker is being tested are lacking.

“There are so few details disclosed given all of the ethical and legal implications,” Wagner said. “It just sounds like this is hastily done.”

Wagner also stressed that there is risk in limiting familial relationships to those with a genetic relationship.

Once a relative has claimed a relationship to a child, health personnel with HHS and the Department of Homeland Security will collect cheek swabs from both children and parents and send it to a contracted lab to verify the relationship. Typically, the HHS said that DNA testing would be used as a last resort if documentation such a birth certificates weren’t obtainable.

Jonathan White, deputy director for children’s programs at the Office of Refugee Resettlement, which is part of HHS, said the information will be used solely for the purpose of verifying relationships and that the data will remain in a strict chain of custody. He didn’t specify whether the information would be destroyed after use in order to protect privacy of migrants, as some have called for.

“Genetic data can be used for a lot of things,” Reimschisel said, pointing to the Golden State Killer case, in which police recently used a genealogy website to track down a long-sought killer. “It’s a big question mark.”