Section 4 of the Reunite Every Unaccompanied Newborn Infant, Toddler and Other Children Expeditiously (REUNITE) Act (HR 6594 / S 3227, 115th Congress)
The Reunite Every Unaccompanied Newborn Infant, Toddler, and other children Expeditiously Act of 2018 (REUNITE Act; HR 6594 / S 3227), Section 4 creates a framework to utilize DNA testing for family reunification and identification. Specifically, this section sets uses and limitations for DNA testing related to informed consent, information protection, and cases where familial relationships are not biological and cannot be determined from DNA testing.
This Act aims to reunite immigrants who were apprehended by the Department of Homeland Security (DHS) and separated from their families. The Act gives the DHS and the Department of Health and Human Services (HHS) authority to create protocols to establish a familial relationship for the immigrants and their families. Importantly, the Act would first prioritize using other tools (e.g. official documents, witness statements, and observations of the interactions between the adult and child) to determine a familial relationship. These methods are useful for reunification of families without biological ties (e.g. those with adopted children) or families who do not consent to DNA testing.
The Act states that if there are still reasonable suspicions about the familial relationship after review of these other means, a DNA test could be administered as a last resort. In these cases, the REUNITE Act would create protocols that detail what type of test to use, how to acquire consent, and how to protect privacy/information misuse. The Act states that the type of DNA test used would be free to detainees and minimally invasive. To further ensure privacy and prevent agencies from using the samples for any other use, the samples would be destroyed within seven days of performing the DNA test.
Before performing the DNA tests, the Act says the DHS and HHS would need to acquire consent from any individual older than eighteen or from a parent or guardian for a child. To protect individuals’ privacy, the Act sets limitations regarding how agencies can use the genetic information. For example, agencies may only access this information for family unification and may not use it for other purposes such as criminal proceedings or immigration enforcement. The Act further states that the DHS and HHS will protect genetic data and personal information.
However, in situations where family members do not consent to DNA testing, the agencies will use other measures for identification and reunification. The Act protects these individuals’ interests by emphasizing that agencies cannot deny a parent’s claim to their child solely because a DNA test was not conducted or there is not a DNA match. The Act creates different protocols to establish familial relationship and creates safeguards to protect families’ interests.
DNA testing is employed in the United States for detainees, refugees, and visa applicants. DNA testing is now becoming standard protocol for validating an individual’s identity and their biological familial relationships.
Under the authority of the DNA-Sample Collection and Biological Evidence Preservation in the Federal Jurisdiction Final Rule (73 FR 74932), detained migrants may have their DNA profile entered into the Combined DNA Index System (CODIS), which is a national database used for criminal law enforcement. Individuals who illegally cross the border have their DNA registered into CODIS; this is done to keep a record of people who have repeatedly try to cross the border illegally or have committed crimes. The Federal Bureau of Investigation (FBI) says that this helps criminal law enforcement link biological evidence from crime scenes to DNA profiles through the use of CODIS.
DNA testing is also used to reunite refugee families by providing a means of identification and proof of biological familial relationships. The U.S Consuls, workers for the U.S. Consulate Services, only require DNA testing when there is a lack of credible information or there is suspicion of potential fraud. The results of this test and other documents such as prison records, military records, birth certificates, and other identification records may be used for establishing an individual’s identity. However, in certain visa applications, like Priority 3 refugee visa petitions (i.e. a refugee is attempting to enter the United States because an immediate family member has been previously admitted to the country), DNA testing is required. The family members listed in the sworn affidavit of relationship must all consent to DNA testing to confirm their relationship. These DNA tests are done by an accredited American Association of Blood Banks (AABB) lab and results are sent to the Bureau of Consular Affairs in the U.S Department of State.
Now, DNA testing is suggested as a tool for family reunification at the border. On May 7, 2018, the Department of Justice implemented a Zero Tolerance immigration policy. This policy mandates prosecution for 100% of violators who attempt to illegally cross the border. On June 20, 2018, President Trump issued an executive order that the DHS will retain custody of immigrant families until the proceedings of their family members are completed. This policy resulted in the separation of up to 3,000 children from their families. While there is little public communication on how the government is currently reuniting families, some media sources suppose that HHS has tried to reunify families by relying on documentation that was collected when the family members were detained.
On June 22, 2018, 23andMe offered to donate genetic testing kits to help reunite families. This offer was short-lived, but it inspired policymakers, including Representative Jackie Spier (D-CA-14), to act by drafting the REUNITE Act. This Act suggests using similar methods to those used in visa applications – namely, documents and DNA testing -- to establish familial identity and relationships. The REUNITE Act proposes that DNA testing could also be used at the border to expedite family reunification. Currently no regulations or laws exist to use DNA testing at the border, so the Act establishes protocols and guidelines on how DNA testing could be implemented.
Genetic material is organized into coding units, or nucleotides, which are the building blocks that create a strand of DNA. The four different nucleotides are Adenine (A), Guanine (G), Thymine (T), and Cytosine (C). Within the long strands of DNA, there are specific segments called genes that code for proteins. Proteins are molecules that have many functions in the body and affect the phenotypes (i.e. observable traits) of individuals.
Children get two copies of a gene: one from their mother and one from their father. Even within these genes, there can be differences in coding. These variations in genes are called alleles, and may differ by as little as one nucleotide (A,T,G or C). These changes in alleles can result in the production of unique proteins that create phenotypic traits.
Genetic tests can analyze a variety of different regions of DNA to identify if the child has inherited alleles from the biological mother and father. This information can then be used to determine biological familial relationships. The degree of shared DNA sequences can differentiate biological relationships to identify if the individuals are parents, siblings, or not biologically related.
Non-invasive DNA testing is a reliable tool to determine biological relationships (Section 4 (b) (3)): Although the science behind DNA testing is not disputed amongst researchers, evidence is emerging that indicate the limitations of how labs interpret DNA testing for identification. For example, the Director of the National Institute of Justice Office of Investigative and Forensic Sciences, Gerald M. LaPorte, explores the limitations of interpreting DNA results. In the article “Wrongful Convictions and DNA Exonerations: Understanding the Role of Forensic Science”, LaPorte evaluates forensic science methods, like DNA testing, and emphasizes that labs can subjectively and sometimes incorrectly interpret the results. Gerald states that these incorrect interpretations of results can come from forensic scientists lacking competency in statistics. Besides poor analyses, these incorrect interpretations can also arise from not analyzing enough sites within the DNA. The National Research Council Committee on DNA Technology in Forensic Science released a report indicating that biases can occur based on the number of sites analyzed; if too few sites are analyzed then siblings can be falsely labeled as unrelated. Even when scientists analyze a standardized number of sites for two DNA samples, they do not have any guidelines for determining what percent of DNA must match to constitute a biological relationship. The U.S Citizenship and Immigration Services released a policy memorandum suggesting that the current thresholds for determining full-sibling and half-sibling relationships are vague. Currently, siblings must have at least a 90% match to say there is sufficient evidence that there is a biological relationship.
Potential data misuse can be minimized by destroying DNA samples within seven days of completing the required DNA matching tests (Section 4 (b) (4)): This assumption has some validity to it, but more research is required to fully understand genetic data sharing and privacy. Researchers, and the NIH, are still investigating how genetic information can be both properly made anonymous and permanently deleted from databases. A 2017 publication, “Genetic Data Sharing and Privacy,” reveals that many scientists acknowledge that absolute privacy cannot be guaranteed. The Health Insurance Portability Accountability Act (HIPAA), an Act that requires data anonymization in healthcare, should be considered because studies show that genetic data can be combined with other public databases to re-identify individuals. Ensuring genetic privacy is especially challenging for family reunification because families need certain identifying traits linked to their genetic data and other personal information to be reunited. The REUNITE Act attempts to set up privacy safeguards, but more research and policy efforts must be made to better address privacy concerns and data protections.
Sara Katsanis, MS, is an instructor in Science & Society at Duke University. Her research focuses on policy evaluations for genetic testing.
Scientific Controversies / Uncertainties
There are a variety of different DNA testing techniques available that differ in both how invasive the procedure is and the accuracy of the results. Currently, there is some uncertainty as to which method will most minimally infringe on privacy. With DNA testing, there are controversies over what information can be extracted, possible misuses of genetic information, and how reliable the results are.
Despite these concerns, DNA testing has risen in popularity among consumers with an estimated seven million people using one consumer DNA testing company, Ancestry.com, since 2013. This is likely because DNA testing can reveal information about disease risk, ancestry, and relatedness. Some individuals including Jen King, the Director of Consumer Privacy at Stanford Law School’s Center for Internet and Society, are worried about what information can be extracted from genetic data. When individuals decide to consent to DNA testing, she points out that they should attempt to fully understand what the consequences of providing genetic data might be.
When DNA is analyzed in labs, there is a lack of consensus regarding the balance of how many regions of DNA need to be analyzed to validate a biological relationship while limiting the analysis of unnecessary genetic information. While some genetic companies, like Illumina and VeritasGenetics, offer full genome sequencing, companies like 23andMe analyze just single nucleotide changes in the DNA, called Single Nucleotide Polymorphisms (SNPs).
The FBI, in an attempt to standardize how many regions of DNA are needed to correctly identify an individual, settled on using thirteen alleles, which are sections of the DNA where the same sequence (i.e. AG) is repeated. The number of repeats within an allele varies from person to person. The likelihood of two unrelated people matching at thirteen alleles is less than one in a billion, making the chances of a false positive extremely unlikely.
There are a variety of factors, including a small or degraded biological sample, that can lead to poor data analyses of DNA testing. Greg Hampikian, a forensics DNA expert, says that there can be biases and subjectivity in reading DNA results that can produce inconsistent results. One situation involving a potentially subjective analysis is when DNA examiners are asked to interpret the results of a DNA sample with more than two donors, also known as DNA mixture interpretation.
The National Institute of Standards and Technology (NIST) conducted a study that looked at how labs analyzed DNA samples. This study revealed that labs with similar accreditations sometimes generated different interpretations of the same DNA sample. Within the study, proponents of DNA testing say that these inconsistencies will only happen in cases of contamination.
Endorsements & Opposition
- Ann Wojcicki (23andMe CEO), twitter, June 23, 2018: “To assist in reuniting families, we intend to offer our genetic testing services through non-profit legal aid org[anizations] 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.”
- Jackie Speier (D-CA-14), interview, June 23, 2018: “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.”
- Jennifer K. Falcon (RAICES communication director), interview, July 5, 2018: "This is a further demonstration of [the] administration's incompetence and admission of guilt. This further drives home the point we've been saying: They never registered parents and children properly,"
- Jonathan White (U.S Health and Human Services official), declaration filed with U.S District Court, July 7, 2018: “[Genetic testing is a] faster but costlier method for confirming parentage than collecting and assessing documentation and anecdotal information.”
With the growing use of DNA testing in family identification, Katsanis discusses policy and societal implications around standardizing informed consent protocols and documents in the cases of missing persons and mass fatality investigations. In mass fatality scenarios, like the World Trade Center attacks, Hurricane Katrina, and the South East Asian Tsunami, current guidelines and best practices do not address issues of consent for living members of potential victims. Currently, informed consent is addressed with a case-by-case review that varies in practice; in some scenarios informed consent is a dialogue between a researcher and subject, and in other cases it can be a written form. Katsanis notes that “procedures for consenting family members are disparate, depending on the context supporting the reason for sample collection.”
Currently, DNA can be collected from women at high risk of violent crime (i.e prostitutes, sex workers, and homicide victims). In another paper, “Perspectives of Women in Prostitution diversion program on DNA collection for a High-Risk DNA Database,” Katsanis uses focus groups to understand the challenges of collecting DNA from women. The group reveals how there are problems regarding “voluntariness of participation, boundaries of authorized uses, confidentiality requirements, and reasonable assurances of privacy.” These issues would need to be addressed to have successful DNA-based identification systems.
In the paper “Policy Implications for Familial Searching,” Katsanis explores the implications of policy decisions for why and how to use familial searching, a practice in which law enforcement takes a DNA sample from a suspect’s family member and runs it through the CODIS database to apprehend criminals. Many states are grappling with how to implement familial searching while navigating issues surrounding logistics, ethics, and the law. Katsanis provides objective background information, such as how to narrow the subject pool, current methods for statistical analysis, and using mitochondria DNA (mtDNA) versus Y chromosome short tandem repeats, to inform policy decisions.