392 - Ethical Consent for Children’s DNA Data Use in Family Reunification after War, Migration, and Disaster: Insights from Expert Interviews

Publication Number: 4384.392

Elizabeth Barnert, UCLA, Los Angeles, CA, United States; Diana Madden, Ann & Robert H. Lurie Children's Hospital of Chicago, Evanston, IL, United States; Sara Huston, Ann & Robert H. Lurie Children's Hospital of Chicago, Durham, NC, United States

Background: Family separation resulting from war, migration, or disasters harms millions of children worldwide, many of whom become lost from their families. DNA can help reconnect separated children with their biological families, but uncertainty about how to obtain ethical consent for children’s DNA data use remains a solvable barrier. Defining concrete, feasible informed consent practices can close this gap and ensure DNA tools are used responsibly and swiftly to aid reunification when needed.

Objective: To examine experts’ perspectives on ethical consent for children’s DNA data use in family reunification following war, migration, and disaster, as an essential step toward developing informed consent protocols.

Design/Methods: We conducted semi-structured interviews (November 2024 – June 2025) using purposive and snowball sampling with experts representing family advocates, pediatricians, ethicists, humanitarian organizations, geneticists, and government partners. Interviews were audio-recorded, transcribed, and analyzed using inductive thematic analysis, progressing from preliminary to focused codes to identify core considerations for children’s DNA consent in humanitarian contexts.

Results: We conducted 23 interviews with 24 participants. As shown in Figure 1, experts emphasized that ethical consent must center the child’s evolving developmental needs while recognizing the contrasts children experience—such as danger and safety, trauma and healing, deprivation and opportunity, and mistrust and trust—that shape the ethical implications of DNA use for reunification. Participants described DNA’s utility for reunification as inseparable from its potential risks, underscoring the need for consent practices grounded in trust, protection, and healing. Surrounding this child-centered core, family, separation, and societal contexts shape how DNA is applied ethically, with the overarching aim of advancing the best interest of the child.

Conclusion(s): Ethical consent for children’s DNA use in reunification following war, migration, or disaster requires trauma-informed, developmentally aligned, and trust-based processes that uphold transparency while centering the child’s best interest.

Figure 1
Figure 1.pdfConsiderations for a Child-Centered, DNA-Led Informed Consent Process for Family Reunification

Table 1
Table 1.pdfExemplar Quotes on Considerations for a Child-Center Informed Consent Process for Humanitarian Family Reunification