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Genetic testing to reunite separated migrant families is an ethical minefield

25 June 2018
Appeared in BioNews 955

US President Donald Trump has now abandoned his policy of separating migrant families attempting to enter the US. However, for those families that have already been divided, the process for finding one another again is not clear. Two commercial genetic testing companies have offered to support efforts to reunite the 2300-plus children that have been separated from their parents at the US-Mexican border. 

Reports suggest that the children of the detained migrants have been transferred to juvenile detention facilities in 15 different US states. Records tracking the movements of these children and their parents appear to be incomplete. The ability of the government to accurately identify which children belong to each adult detainee has been called into question. 

Jackie Speier, a Congress Representative for California, appealed for assistance from the private DNA testing company 23andMe, to help reunite these families as quickly as possible. In an interview with USA Today, Speier said: 'If you've got infants, they don't know their names, they don't know their parents' names. 23andMe tests would allow the Department of Justice to match people. Right now, there's no way to know who a parent or child is.' 

Since Speier's plea, both 23andMe and another private genealogy company, MyHeritage, have pledged to help the reunification process by donating DNA) testing kits and their sequencing services to those affected by Trump's 'zero tolerance' immigration policy. 

Genetic testing may seem like a quick and relatively easy way to pinpoint familial relationships, but it raises a number of legal and ethical issues. 

First and foremost is the problem of serious privacy risks associated with generating and storing genetic information. Procedures would need to be put in place to ensure that this information is protected and not misused by the government or other third parties. 

One solution would be for all genetic data to be destroyed once a parent-child match had been made. However, current regulations state that all genetic testing laboratories must store their results for ten years, to allow their procedures to be externally validated. As a result, genetic testing companies could potentially be forced to release their data to aid legal proceedings in the future. This in turn could place migrants and their relatives in a very vulnerable position. 

Due to the highly personal nature of the data that would be obtained and the lack of assurance surrounding data control, it is of paramount importance that informed consent is gained from those undergoing genetic testing. However, the ability to establish consent in this situation is another thorny issue. 

Minors are not able to give consent. For obvious reasons, it is not possible to obtain parental consent for them. Conversely, any adults that do consent to genetic testing are doing so in an environment of extreme stress where the long-term consequences of such testing may not be adequately considered or discussed. 

As Marcy Darnovsky, executive director of the Center for Genetics and Society, recently told Mother Jones: 'Coming up with a solution for people who are already at risk in this country by handing over very private information seems very dangerous.'

The offers of services by 23andMe and MyHeritage may be well meant. But acting before carefully thinking through these complex ethical issues could lead to more problems for migrant families in the long term. As Darnovsky has suggested, a simpler and more low-tech intervention – like filing cards and a spreadsheet – could do the job of reuniting families just as well, without attempting to walk this blurry ethical line. 

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2 September 2019 - by Georgia Everett 
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7 May 2019 - by Bernie Owusu-Yaw 
The USA's Department of Homeland Security is expected to initiate a DNA testing pilot programme this week at the US-Mexico border, in efforts to verify genetic relationships within families entering the USA...
28 January 2019 - by Martha Henriques 
The US Food and Drug Administration has approved a direct-to-consumer genetic test for a hereditary form of colorectal cancer by 23andMe...
9 July 2018 - by Dr Melanie Krause 
Over 2500 migrant children, who were separated from their parents at the US-Mexican border, will be genetically tested to reunite them with their families...
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