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Order, Spit, Discover. What are the risks of gene testing migrant children?

July 17th, 2018
in:Technology
by:Shira Jeczmien
located in:United Kingdom, USA
tags:23andMe, gene testing, migrant children

The gene testing startup 23andMe became well known for its home testing heritage kit. For £149 users can “1. Order, 2. Spit” and “3. Discover” their ancestors, health and inherited traits; gene testing has never been so easy as the company boasts.

So it came as no shocker when late last week, California’s 14th district representative Jackie Speier approached 23andMe’s CEO Anne Wojcicki in a desperate plea to help reconnect some 2,500 unaccounted for migrant children who have been separated from their parents in the latest U.S. immigration debacle. Wojcicki agreed.

The idea was simple—to Speier and her team at least: in order to right the wrong in a cost efficient way, 23andMe would step in with its easy to use and highly accurate gene testing technology and swiftly reconnect children with the families from which they have been forcibly separated and shamefully unaccounted for. But as quickly as the move was made public, the scientific community, as well as bioethicists in the field of gene testing and sensitive data have been increasingly vocal about their disagreement with such a move for two dominant reasons. For starters, gene testing on the level of 23andMe—originally used to discover complex inherited health conditions and ancestors—is not the most efficient way to reconnect children with their parents. Scientists have argued that if the government needs help accurately reuniting immigrant families, it should consider a more basic paternity or maternity test.

Secondly is the concern that in a rush to reunite children and babies lost in the system, the genetic information collected could be further perpetuating the “zero tolerance” approach towards immigration currently spiraling out of control in the U.S., while fuelling the database of Immigration and Customs Enforcement (ICE) - opening a backdoor to an extensive surveillance system in disguise. As commented on by Arthur Caplan, a bioethics professor at the NYU School of Medicine, “It’s not as simple as just saying, ‘Hey, let’s just use our magic wand of DNA testing, and we’ll put everybody back together again’. There are challenges.”

In response to the criticism of the collaboration, 23andMe CEO tweeted, “To assist in reuniting families, we intend to offer our genetic testing services through non-profit legal aid orgs representing the families. We recognize that genetic data contains highly personal information and we want to ensure the data is only used for reuniting families.”

With 23andMe (now joined by other genetic testing private companies such as MyHeritage and Thermo Fisher Scientific) offering its services in aid of this U.S. crisis, it is clear that the company is occupied with ensuring that its collected data will only be used to reconnect families. Yet a crucial—and legal—aspect of the gene testing service has been widely left unaddressed: in order to test a person's genes, a consent form must be signed by that person, something that minors are clearly unable to consent to.

Beyond the fiasco that this inexcusable circumstance has caused, accepting donated services offered by profit and venture capital driven companies is clearly not the way forward. Caplan says that while “We shouldn’t forget that it’s absolutely inexcusable that the administration scattered children all over the place and doesn’t have the information at hand to reunite these families,” acting from a place of panic rather than rational might further escalate the circumstance. What instead needs to be done as Caplan suggests, is a paternity and maternity testing unit, supervised by an external body such as the National Academy of Medicine, where a board of experts have the ability and access to address questions of privacy and consent.

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Article written by:
Shira Jeczmien
Author, Contributing Editor
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California plea help to reconnect some 2,500 unaccounted for migrant children who have been separated from their parents in the latest U.S. immigration debacle.
Embed from Getty Images
23andMe would step in with its easy to use and highly accurate gene testing technology and swiftly reconnect children with the families from which they have been forcibly separated and shamefully unaccounted for.
Embed from Getty Images
The process should be supervised by an external body such as the National Academy of Medicine, where a board of experts have the ability and access to address questions of privacy and consent.

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