Bioethics, Reunification, and Genetic Testing along the US Mexico Border: is “23and Me” the Answer?

Abstract

Between April and the end of June 2018, the Trump administration’s family separation policy was put into effect, granting federal border agents the authority to separate children from their parents accompanying them across the border. Since July, reunification has proven difficult for hundreds, particularly younger children who lack documentation. Perhaps sensing opportunity, direct-to-consumer genetic testing companies (DTCG) have begun offering help. “MyHeritage,” e.g., has offered 5,000 testing kits, and 23andMe co-founder Anne Wojcicki recently tweeted that 23andMe would "welcome any opportunity to help…reunite family members that were tragically separated from each other,” as “connecting and uniting families is core to the mission of 23andMe.” While genetic testing could provide for a scientifically reliable method for reuniting families, these current proposals raise moral and bioethical questions that need to be addressed first. We pose these questions, grounding their relevance in data gathered from a recent ethnography of users of DTCG services, where we found the majority of consumers were unaware of the degree of consent granted to genetic companies, or the extent to which testing companies could make use of, or profit from, their biological data. Questions of what it means to access DNA, or provide informed consent under duress, the genomic literacy of minors, fair use and ownership of data, and biocapital. With these questions in mind, we seek to call attention to the bioethical considerations of using consumer genetic tests for the reunification of families.