• Author
    Jessica Roth
  • Discovery PI

    Elizabeth Barnert MD, MPH, MS

  • Project Co-Author

    Diana Madden, MA; Sara Huston, MS

  • Abstract Title

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

  • Discovery AOC Petal or Dual Degree Program

    Social Science & Medical Humanities

  • Abstract

    Background: Family separation resulting from armed conflict, migration, or disasters affects millions of children worldwide and is associated with profound developmental, psychological, and safety concerns. While DNA testing has been utilized in a variety of humanitarian settings with adults, an ethical process to consent children in the absence of their parents remains a solvable barrier.

    Objective: To examine experts’ perspectives on ethical consent for children’s DNA data use in family reunification following separation in armed conflict, migration, and disasters, as an essential step toward developing informed consent protocols for DNA-led humanitarian reunification.

    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, government partners, and reunified young adults. We conducted 23 interviews with 24 participants. Interviews were audio-recorded, transcribed, and analyzed using inductive thematic analysis to identify core considerations for informed consent for children’s DNA data use for reunification in humanitarian contexts.

    Results: Participants emphasized that ethical consent must center the child’s best interest, while considering the contrasts children experience—of danger and safety, trauma and healing, deprivation and opportunity—that shape the ethical implications of DNA use for reunification. Time, trauma, and trust emerged as three cross-cutting constructs that shape how consent decisions are understood and evaluated across contexts. Time addresses children’s changing developmental capacity as they age, their evolving attachments to caregivers, and the shifting political and legal contexts surrounding them. Trauma is pervasive in the experience of family separation and shapes how children, families, and communities understand information, perceive risks and benefits, and engage in consent processes for DNA use. Trust operates relationally between individuals, institutions, and systems, shaping whether DNA use for reunification is viewed as safe, transparent, and protective of the child’s best interests. Ultimately, consent processes must be based on established ethical standards and norms for child consent, centering the child’s best interest over time, with heightened protections given the extreme vulnerability of children experiencing humanitarian family separations.

    Conclusions: Ethical consent for children’s DNA use in reunification following separation in armed conflict, migration, or disaster requires trauma-informed, developmentally aligned, and trust-based processes that uphold transparency while centering the child’s best interest. This study presents a conceptual model to guide the development of ethical consent protocols for children’s DNA use in the pursuit of safe and timely reunification across diverse contexts.

     

    Table 1: Exemplar Quotes on the Best Interest of the Child as a Central Consideration for Informed Consent Processes for Children’s DNA Data Use for Humanitarian Family Reunification

    Illustrative Quotes (Interviewee)

    Center on the best interest of the child: “Of course, when we think about DNA, you're thinking ‘Oh, of course it's a no brainer, because we want to find the biological parents of the child.’ And of course, that's, you know, a very honorable goal. But the key here is to always reframe and think about the best interest of the child.” (Pediatrician)

    Best interest determination can change over time as a child ages and the risks/benefits of consenting shift: “If you are six… or eleven, then I think it is much more important [to revisit a consent decision], because the developmental ability to process the information and the risk and the utility changes dramatically.” (Advocate)

    Role of adult decisionmaker who can make determination in best interest of the child: “And somebody needs -- if the parent’s not there -- somebody has to stand next to that child with the best interest of that child, and that's all they're representing.” (DNA Service Provider)

     

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