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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Paper: An ELSI-informed strategy to use DNA data for humanitarian family reunifications


ELSIcon2022 • Paper • May 31, 2022

Sara H Katsanis, Diana Madden

Family separation—whether caused by armed conflict, repressive regimes, disasters, or immigration policies—is traumatic for children and adults. Typically, families and advocates rely primarily upon paper documentation to connect families, which can take months or years. Given the significant harms of family separation, it is critical to implement DNA technology because it is a powerful tool to link genetic families. For migrant families recently separated or facing separations, we need a secure, ethical, humane, and sustainable framework to collect and manage sensitive DNA data. We examined long-standing applications of DNA testing in immigration and humanitarian identifications to delineate the utilities and pitfalls of DNA testing. Some pitfalls are shared with familiar health-related DNA testing ethical/social implications, but the power of government officials to separate families, deny immigration benefits, or make accusations of fraud in a vulnerable population elevates the potential harms. Our mapping of the risks and benefits in various contexts has allowed us to develop a framework to collect and manage sensitive DNA data to support family reunifications. The proposed strategy involves a database structure (not direct parent-child DNA tests), in partnership with nongovernmental organizations but outside of government control or access. The strategy also builds on prior successes in identification efforts. No technology can reunite all families; however, armed with a decade of ELSI research, proper protections can be placed for data and families. Avoiding use of DNA out of fear of perceived harms would deny families access to their human right to scientific technologies.<br>


Data and data stewardship

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