Compulsory Genetic Testing for Refugees: No Thanks

By Gali Katznelson

lab worker testing dna
DNA tests are not perfect and they can be vulnerable to manipulation. The UNHCR says genetic testing is an invasion of privacy. (Photo by andjic/Thinkstock)

Recent reports claim that Attorney General Jeff Sessions is considering using genetic testing to confirm the relationships of children who enter the country with adults to determine if they share a genetic relationship.

The website the Daily Caller reported that Sessions suggested in a radio interview that the government might undertake genetic testing of refugees and migrants in an effort to prevent fraud and human trafficking.

This proposal is problematic, not only because DNA testing is unreliable and vulnerable to hacking, it is also an invasion of privacy and flies in the face of guidelines from the United Nations’ refugee agency.

Genetic information is the most identifiable piece of data each of us has. But DNA also carries information about our relatives. In fact, the US considers genetic information so important that Congress has taken a number of measures to protect it, including the Genetic Nondiscrimination Act. GINA protects genetic information from health insurance and employment discrimination, and was passed in 2008.

An international right to privacy is also well established. For one, the International Covenant on Civil and Political Rights (ICCPR), to which the US is a signatory, enshrines a right to privacy. This right is not absolute, however.

The UN Human Rights Committee explains that any interference to a right to privacy must be “a proportionate means to achieve a legitimate aim, which should be in the interest of society, be reasonable, and must comply with the provisions, aims and objectives of the ICCPR.”

So the question is, does the aim of preventing fraudulent immigration merit using genetic testing on refugees?

No. This approach is not reasonable.

First, DNA testing is not a good measure of familial relationships. Adopted children and stepchildren do not share genes with their parents, yet these relationships are still valid, including when a family applies for asylum. There is no single legal definition of family, and genetic testing can overlook relationships that are otherwise socially or culturally legitimate.

Second, genetic testing is not yet perfect. False positives and false negatives often emerge. A test with dubious reliability should not be used to determine something as crucial as the whether a child should remain with their parents.

Finally there’s a question of trust. Can we trust the government to keep this data secure and free from abuse?

The ancestry site MyHeritage was hacked recently, compromising the genetic information of 92 million users. What sorts of protections would be in place to guard the genetic data of refugees and migrants, some of the world’s most vulnerable people?

The asylum-seeking process is already difficult, made more challenging by Sessions’ latest declarations that those fleeing gang or domestic violence will no longer be eligible for asylum. (For why that’s abhorrent, read this.)

Will a governmentally-curated record of refugee genetic data lead to yet more discrimination in the immigration process?

This is not the first time the US government has used genetic testing in the immigration process. The P-3 Family Reunification program allows refugees to join their family in the US. In 2008, the program launched a pilot that mandated African refugees seeking to reunite with the families in the US to prove familial relationships through DNA testing. Though the pilot concluded that many people were reporting fraudulent relationships, the program was heavily criticized for the way in which it reached its conclusions.

In response to countries such as the US, France and Denmark increasingly mandating genetic testing of refugees, the United Nations High Commissioner for Refugees (UNHCR) released a note in 2008 specifying, “In light of its intrusive nature and risks of infringing an individual’s right to privacy… every step should be taken to ensure that DNA testing to verify claimed family relationships is conducted only as a last resort.”

Other methods, such as oral interviews or documentation (if available) should be used. If any doubt continues to exist, only then can a government resort to DNA testing, according to the guidance from the UNHCR.

The note also states that in the case the DNA testing is used, refugees must give explicit informed consent and be given a choice to opt out of testing. They should also receive pre- and post-test counseling from experts. Refugees should be made aware that tests have the potential to reveal unexpected findings that may fracture an individual’s identify and sense of family.

DNA testing should only be used as a last resort if concerns about fraud persist, or if a refugee willfully wishes to take the test to aid their application.

Compulsory genetic testing is not only an invasion of privacy, it is also a poor measure of familial relationships, it is often unreliable, and its data has the potential to be breached and used for nefarious purposes. DNA testing should not be mandated for anyone.

Instead, it’s time to consider ways in which DNA testing might help reunite families.

Gali Katznelson

Gali Katznelson

During her fellowship year, Gali Katznelson was an MBE candidate at the Center for Bioethics at Harvard Medical School. Before her master's degree, she completed a bachelor’s degree in Arts & Science at McMaster University in Canada. Her fellowship project focused on clinicians' perceptions of the uses and regulations of smartphone mental health apps.

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