Aug 15 2018
Under the Microscope – Sara Katsanis and Jen Wagner
As the Trump administration’s “zero tolerance” immigration policy unfolded in Spring-Summer 2018, so too did a barrage of stories around migrant children being separated from their parents, and then mandates to re-unify them by judge-ordered deadlines. Atop the chaos were calls for DNA testing to screen migrants for trafficking, offers from genomics companies to donate tests and reagents, and the announcement of DNA as a tool to reunify families. As legislators, civil liberties advocates, geneticists, ethicists, and attorneys got involved, the media sprang into action to translate for the public the convoluted history of the use of DNA in immigration.
In their presentation at ISHI, Sara Katsanis (a faculty instructor in the Initiative for Science & Society at Duke University) and Jen Wagner (Associate Director of Bioethics Research in the Center for Translational Bioethics & Health Care Policy for Geisinger Health System) will discuss some of the misreported ‘facts’ shared in the media, and what we can learn from this situation. We sat down with Sara and Jen and asked them to elaborate on the history of DNA and immigration, the challenges that exist when considering DNA for this purpose, and what we can learn from this situation.
Hi Sara and Jen, thank you for talking with us today. The topic of using DNA to reunite immigrant families has been very popular in the news lately, and will be great to discuss with an audience knowledgeable in DNA.
There have been a lot of stories in the media recently about the situation at the border and reuniting families through DNA. It can be confusing to sort through. What would you say are the top misconceptions at present?
So many, too many. There are confusions on DNA samples vs DNA profiles, rapid DNA vs traditional tests, relationship testing vs DNA genotyping, STRs vs SNPs. There also is a lack of knowledge about the laws that apply and the oversight mechanisms. Among the discussion were (a) collection of DNA from detained border crossers for CODIS, (b) use of DNA to verify claimed relationships at the border, (c) use of kinship database to locate displaced family members, and (d) use of relationship tests to verify biological relations prior to reunification.
Your abstract mentions that some details were misreported. Can you elaborate on what those were and why they are important to understand fully?
Misreported information included who is permitted to conduct DNA tests for authorities vs private testing, and also who would have access to test reports, whether through a commercial laboratory or through the government. The most challenging aspect to navigate was the lack of information on how the government was using DNA tests, leaving the media and experts guessing and communicating partial information and half-truths.
In brief, what is the history of DNA and immigration? Given that, what about the current situation surprised you? Conversely, what about the current situation was more predictable?
The first DNA tests in the 1980s were for immigration, so this is not a new application. The tests used today in immigration are basically the same ones that have been used for over 20 years, and the technology is used routinely in disaster victim identification. What was new in this situation was the opportunity to use such tests for reunification of live family members, hopefully to expedite biological cases. The offered use of SNP panel or rapid DNA tests outside of the government was refused, citing concerns for privacy of genetic information. This was avoidable. The public needs to understand better how genetic information can be used and how data can be protected. Another distinguishing aspect was that in the past when DNA testing had been used by the US government for purposes of familial reunification, the US government’s actions were not also the direct cause of the familial separation giving rise to the need for reunification. This year, the use of DNA testing was susceptible to extensive criticism because the government’s motivations and interests were not articulated clearly. Predictably, the muddied motives and lack of transparency fueled public fears.
There has been some confusion as to which types of DNA tests would be appropriate for reuniting immigrant families. Can you please clarify when the following might be most appropriate and why?
Consumer genomic services
Commercial relationship testing services
Forensic DNA laboratories services
Because appropriateness relies not only upon the genetic technology best suited for the needed analysis but also upon the legal authority to conduct the sample collection and analysis, it is difficult to answer this question fully. But we can address our perspectives on the pros and cons of the different approaches. SNP panels have an advantage over STRs in that the DNA profiles are not as useful for forensic purposes since crime scene evidence is typed for STRs. Using consumer genomic tests can keep the DNA testing information private to the consumer, and outside the government. The SNP panels are also better than STRs for more distant relationships, as is common in migration cases. Commercial relationship tests and forensic testing are used routinely in immigration and for law enforcement purposes. Both types of accredited laboratories have an important role in verifying claims to prevent fraud, to protect the safety of displaced children, and to collect DNA for CODIS as required by law.
What challenges currently exist when considering DNA testing for this purpose?
CONSENT FOR VOLUNTARY SPECIMENS – when families are in a crisis, whether a mass disaster or split family – they are unable to provide full consent; children too are unable to consent; an advocate is needed to communicate and act on behalf of the family, and then an on-going consent process needed to communicate later to the family what has happened with their private information. TRANSPARENCY – DNA tests used by the government should be understood by the public, particularly when used on a vulnerable population that is unable to fully consent. If the details of the program are not accessible, trust in the science itself and the governmental actions and decision-making with the science can be called into question. FACTS GIVEN CONTEXT – the public is confused about the various ways genetic information can be used at the border; information needs to be available to breakdown where the risks lie, what protections are available, and how to weigh risks given the context of the use of genetic information. BIASES – there is a legitimate question about how the separations and DNA testing were operationalized and whether there is measurable bias in policy and practice as it relates to migrants and systemic discriminatory treatment based on national origin, race/ethnicity, and religion.
In your opinion, has the way this crisis has been handled and the related media coverage harmed (or helped) the perception of DNA as a tool for reunification?
YES. The initial crisis was full of emotion – ANGER that children were removed from their families and FEAR that children were being used to gain entry into the U.S. The sudden urgency to reunite families led to a barrage of partially informed opinions and half-truths. The casualty of the lack of transparency and facts is that the public now fears that the government will collect DNA from immigrants (and those suspected of not being American by virtue of their race, ethnicity, religion, or appearance) and warehouse it in CODIS for future crime-solving or nefarious purposes.
Previously at ISHI you spoke about rethinking international missing persons’ databases. You’ve also done quite a bit of work regarding DNA and human rights and human trafficking. How does this situation relate (if applicable)?
Working on these sensitive situations (human trafficking and human rights) has highlighted for us the importance of weighing risks of using genetic information given the context of a person’s situation. Informed consent is one of the important ways to communicate risks and allow people to make a choice and to later change their minds. It has also highlighted the vulnerability of certain populations that deserve equal access to technology, but who are easily coerced or taken advantage of. Having a DNA program that is designed with the ethical and legal challenges in mind and designing a program that enables accountability is essential to building public trust in and support for it.
In your opinion, what can be learned from this situation? Going forward is there anything that can be done—politically, legislatively or otherwise—that might help overcome some of the challenges in the future?
Legislative protections are needed to prevent genetic information being collected and used for non-criminal purposes from being used in other contexts. This is particularly important in this context since the Privacy Act protects only U.S. citizens and legal residents.
Thanks for talking with us Sara and Jen! If you’d like to see them speak in person, you can register for ISHI through the link above.
WOULD YOU LIKE TO SEE MORE ARTICLES LIKE THIS? SUBSCRIBE TO THE ISHI BLOG BELOW!