Future Tense

DNA Testing on Separated Migrant Families Needs Robust Privacy Safeguards

Genetic data may help reunify families fast. But without limitations, there’s serious potential for misuse.

Janey Pearl stands with Yeni Maricela Gonzalez Garcia as she speaks with the news media following a visit with her children at the East Harlem Cayuga Centers on July 3 in New York City.
Janey Pearl stands with Yeni Maricela Gonzalez Garcia as she speaks with the news media following a visit with her children at the East Harlem Cayuga Centers on July 3 in New York City. Spencer Platt/Getty Images

Last week, a federal official confirmed that the Trump administration, under a court order to reunify families that have been separated at the border, has begun using DNA tests to match children and parents in their custody. The official, speaking to CNN, said, “To our knowledge, this is a cheek swab and is being done to expedite parental verification and ensur[e] reunification with verified parents due to child welfare concerns.” Although this is not the first time immigration officials have relied on genetic testing to confirm familial relatedness, such testing has never been conducted on such a large scale.

As others have pointed out, the government should never have had to resort to genetic testing to sort out any of these families. The Department of Health and Human Services has had nearly 3,000 separated immigrant children, including about 100 under the age of 5, in its custody. Yet, as the New York Times has reported, “[r]ecords linking children to their parents have disappeared, and in some cases have been destroyed.” With court-ordered deadlines looming and already past, the spotty documentation has left HHS scrambling to reconnect families without reliable data. HHS Secretary Alex Azar said the agency has ruled out traditional methods like obtaining birth certificates (too slow) or asking children (unreliable). Instead, he said, the agency is using DNA testing as a faster, more reliable route to reunification. It’s a controversial move. But now that the administration has chosen to use this technique, it needs to ensure that it imposes certain safeguards to minimize the invasion of privacy that genetic sampling involves.

As of this writing, it remains unclear how long DNA sampling has been going on, exactly how it is taking place (both cheek swabs and blood tests have been reported), or what kind of consent officials are attempting to obtain from either children or their relatives. Nor it is clear precisely who is conducting the sampling and analysis, or whether any of the DNA samples or data are being shared with outside parties or stored in any databases. In a recent court declaration, one official stated that “ORR grantees,” “DHS personnel,” and “field teams deployed by HHS” are swabbing cheeks, and the swabs are then being sent to “a third-party laboratory services provider,” though multiple media outlets and advocates report that the Department of Homeland Security and HHS have not responded to requests for further information on the testing.

Certainly, reunifying families separated under President Trump’s “zero tolerance” separation policy should be a priority. But using genetic sampling to facilitate reunification raises a host of legal and ethical challenges. When companies like 23andMe and MyHeritage offered to undertake genetic testing to aid in reunification, many experts, including the American College of Medical Genetics and Genomics spoke out against the efforts. One group of over a dozen geneticists, genetic counselors, and ethicists signed on to a response in the Baltimore Sun making the case that that DNA testing is not an appropriate way to reunite families, writing that “parents know their children and vice versa.” These experts also expressed concern about the possibility that DNA testing “could reveal unexpected family relationships (such as adoption, non-paternity, consanguinity) that are irrelevant to the goal of reunification.” Two prominent civil rights groups representing some of the immigrant families, RAICES Texas and the Texas Civil Rights Project, declined offers from consumer DNA-testing companies to provide kits. RAICES communication director Jennifer K. Falcon said the organization doesn’t support the government using them either, in part because it simply is not possible for migrant children to consent to testing.

With the administration confirming that such testing is underway, however, the debate may have to turn to whether the government can accomplish testing and reunification in a way that minimizes the potential for misuse. Thankfully, on Tuesday the same federal district judge who ordered family reunification also ordered significant limits on the government’s use of DNA testing to accomplish that goal. The court included instructions about the cases in which the government should and shouldn’t administer such testing, and how it should handle the samples. (We have yet to see whether the Trump administration might seek to stay the order.)

These limitations are welcome. And assuming they hold, they also reflect several safeguards that federal law and practice already recognize. But the administration’s privacy protections should go further. There are at least three essential safeguards that officials should put in place. Each has a basis in existing law and practice related to genetic data volunteered for a different kind of family reunification—the rules that govern the DNA samples collected as part of the FBI’s missing persons program.

First, the government must ensure that the DNA data is used only for reunification purposes. This means making sure that those collecting the genetic samples and doing the analysis keep their data separate from systems used for crime detection and other purposes. The Trump administration has already at least acknowledged that this should be important. Jonathan White, the deputy director for children’s programs at the Office of Refugee Resettlement, the HHS agency overseeing the separated children, asserted that HHS will “use [DNA] results only for verifying parentage.” The district court order yesterday also specifically instructed that DNA samples not be used for any other purpose.

The statement and order spell out a crucial limitation, as the repurposing of genetic data for criminal investigations and other uses is a real concern. Local police departments frequently retain voluntarily provided DNA samples—including DNA obtained from crime victims—in off-the-books databases. These “rogue” databases can jeopardize legitimate law enforcement efforts by dissuading individuals from cooperating with police, and flout legal limits regarding consent and expectations of privacy. Considering how the Trump administration has talked about and treated immigrants at the border, worries about the potential use of immigrants’ genetic data for profiling and tracking immigrants after they are released from custody aren’t exactly far-fetched either.

The national missing persons program provides some legal precedent for the collection and use of genetic data for the limited purpose of reunifying families. In addition to keeping databases of DNA profiles from arrested or convicted individuals and from crime scene evidence, the FBI also maintains similar but separate databases for identifying missing persons. Collectively, the FBI refers to these databases and the software that powers them as the Combined DNA Index System, or CODIS. The national missing persons program seeks to match DNA profiles from unidentified persons (often, human remains) with DNA profiles “voluntarily contributed from relatives of missing persons.” As explained in the FBI’s operational procedures manual, authorities must store DNA profiles in the missing persons databases separately from the offender and forensic profiles, and are only allowed to compare profiles in the voluntary family reference database to those in the unidentified persons database.

For family reunification purposes, children separated from their parents at the border might resemble “unidentified” persons. The parents of these separated children, in turn, resemble individuals who might contribute DNA to the family reference database. Obviously, the analogy isn’t a perfect fit. Most significantly, the status of separated immigrant children as nominally “unidentified” stems from the government’s failure to properly track these families after separation, not from some unknown criminal element. Moreover, as numerous experts have explained, voluntary consent—the cornerstone of the FBI’s family reference databases—is difficult, if not impossible, to obtain for individuals in government custody. Finally, the FBI’s CODIS databases are designed for use by criminal justice agencies for law enforcement purposes, while immigration offenses can be civil or criminal in nature.

Still, if the government continues to pursue DNA identifications for reunification purposes, the FBI’s strict rules limiting the use of family reference data provides a model for appropriate sequestration. As I have suggested elsewhere, such sequestration is essential for any entity conducting this genetic analysis, including both government labs and third-party contractors—a crucial consideration, given that the government is using a yet-to-be-publicly-identified lab services provider for this family reunification testing.

Second, the government should also limit any DNA sequencing to the minimum amount required to establish genetic relatedness. Again, the FBI’s missing persons program may provide a model for minimally invasive testing. Typically, CODIS’s DNA profiles are drawn from 20 highly variable locations on the human chromosomes, which can provide enough information to determine a match or close relative. These profiles consist of data drawn from noncoding DNA, meaning that the locations of the DNA sequenced don’t code for proteins. (Consumer genetic profiles, by contrast, typically rely on coding DNA to determine an individual’s traits and health risks.) In upholding compulsory DNA sampling of individuals arrested or convicted of crimes, courts, including the Supreme Court, have emphasized that noncoding DNA is relatively uninformative, and therefore only a minimal invasion of privacy.

But scientists are beginning to find that these portions of DNA are not merely the “junk” they once thought. For example, researchers are beginning to find links between a host of genetic disorders and certain noncoding regions of the genome. The potential to detect such intimate information may complicate even this restricted sampling, and it highlights the importance of limiting how the government (or any third parties) uses and stores this data. Insofar as familial relatedness is to be established by genetic means, the government should seek to learn enough to successfully reunify families—and as little about everything else as possible.

Third, government officials must ensure that any parties involved in collecting and analyzing DNA samples destroy both the samples and related data once a family reunification has occurred. Unless and until this information is destroyed, the risk that authorities or other parties could repurpose this information for profiling, tracking, criminal investigation, or other uses remains. The district court agreed. The judge instructed that the DNA samples must be destroyed within seven days. Unfortunately, it’s possible the order may not have gone far enough. The government should guarantee that it, as well as any third parties assisting with DNA identifications, will destroy both the DNA samples and related data to ensure adequate privacy protection.

Here, again, the administration could look to the CODIS missing persons program as a model. According to FBI procedures, officials must remove DNA records of a relative of a missing person once, “the missing person … has been identified.” As family reunification involves collecting genetic information from both children and parents, all parties handling this information should destroy both sets of genetic samples and related data once their reunification purpose has been served.

The Trump administration’s turn to genetic testing is unfortunate and likely unnecessary—and it was, above all, almost certainly avoidable. It also leaves many ethical questions unanswered. But it is the approach the government appears to have adopted. It is encouraging that the district court overseeing family reunification efforts has recognized the importance of limiting the government’s use of this controversial testing. We have yet to see exactly how the compliance with this order will play out, however. In light of the carelessness with which the U.S. government tore these families apart, the very least it owes them is a swift reunification and an assurance that the method it uses will not be used to harm them again.