Using DNA Kits to Reunite Families Raises Privacy Concerns, Experts Say - NBC4 Washington
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Using DNA Kits to Reunite Families Raises Privacy Concerns, Experts Say

Though the DNA companies pledged their support, it’s unclear whether the kits will make it to the border

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    NEWSLETTERS

    Using DNA Kits to Reunite Families Raises Privacy Concerns, Experts Say
    Andrew Burton/Getty Images
    Research technicians prepare DNA samples to be sequenced in the production lab of the New York Genome Center in this September 2013 file photo.

    What to Know

    • Several geneticists told NBC that using DNA kits to reunite families raises a number of privacy concerns.

    • The DNA companies’ intentions for the DNA after it’s used to match children and parents are unclear.

    • Between May 5 and June 9, 2,235 families were separated.

    Three DNA companies have announced they will donate DNA kits to help reunite immigrant children with their parents, as the Trump administration moves to end a policy of splitting up families at the U.S.-Mexico border.

    MyHeritage said in a news release that it aims to provide 5,000 free DNA tests for interested parents and children who were separated. 23andMe CEO Anne Wojcicki said in a tweet the company would “welcome any opportunity to help.” DNA Diagnostics Center said it plans to provide DNA tests and send trained staff members to the detention facilities.

    The announcements come a day after President Donald Trump signed an executive order preventing children and their parents from being separated at the border.  

    Several geneticists told NBC that using DNA kits to reunite families raises a number of privacy concerns. In addition to helping find a relative, DNA samples can also reveal potential new information about a child’s parents and the prevalence of cells that could put a child at-risk for diseases such as cancer, said Dr. Edward Benz, a genetics professor at Harvard Medical School.

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    “You can find out the child is the son or daughter of the mother and not the father you think it is,” Benz said. “The test itself, a cheek swab, is terribly invasive.”

    Dr. Ada Hamosh, a professor of pediatric genetics at the Johns Hopkins McKusick-Nathans Institute of Genetic Medicine, said DNA companies benefit from collecting the information because the DNA can be used as a control variable in future testing. 

    A MyHeritage spokesman said the organization won’t provide DNA information to a third party. A spokeswoman for Rep. Jackie Speier, who urged 23andMe to donate the DNA kits, told NBC that “the congresswoman has made it clear that she would want to ensure the information is only used for matching parents with children. Once that occurs, it should be rapidly destroyed.”

    “The concerns we have with large DNA companies are those databases are being stored,” said University of Rochester Pathologist Scott LaPoint. “It’s problematic.”

    It’s also unclear whether children would be able to use a DNA kit to connect with their parents without parental consent. U.S. HIPPA law is not applicable because the DNA is not being collected by a medical provider and is not being used for a medical purpose, Cathleen Scott, a Florida-based attorney, said.

    Washington, D.C.-based Family and Criminal Law Attorney David Stein told NBC both parties should be required to sign a consent form provided by the DNA testing company to avoid liability issues. The companies’ announcements don’t mention the concept of consent. Migrants have a right to privacy, Scott said.

    Between May 5 and June 9, 2,235 families were separated. Under the new executive order, parents and children will be held in immigration detention centers together. However, the government hasn’t introduced a formal plan to reunite those already separated.

    DNA kits were used to identify victims after Hurricane Katrina. 

    Though the DNA companies pledged their support in this case, it’s unclear whether the kits will make it to the border.

    A MyHeritage spokesman said the company hopes to collaborate with the U.S. Department of Health and Human Services, which didn’t respond to multiple NBC inquiries. A 23andMe spokesman said in an email that the process was in its “extremely early stages.”