Developing strategies for using DNA data to assist family reunifications across child development stages

PROJECT SUMMARY
Family separations due to disasters, armed conflict, and migration affect millions, are expected to increase,
and damage children’s health across the lifecourse. Given the extreme trauma of separations, reunifications
should occur quickly in the child’s best interest, when safe to do so. Young, pre-verbal children are unlikely to
be able to recount contact information of family members. DNA data can be powerful both for identification and
for kinship verification of children separated from their families, as DNA can quickly, accurately, and
inexpensively provide concrete evidence of genetic family ties. We propose to investigate strategies for (1)
protection of children’s DNA data; and (2) consent for children at varying developmental stages to inform
development of a U.S. family reunification DNA database strategy to serve as a scalable humanitarian
“techquity” intervention to be activated when needed to reconnect separated children with their families. Our
goal is to inform U.S.-relevant protocols, partnerships, and infrastructure for DNA-based family reunification
responses that can be activated following separations, including after a mass separation event such as a
natural disaster, while ensuring protections of children’s DNA data are in place. In the past, DNA data have
been successfully used for disaster victim identification and for limited, scenario-based family reunifications of
“disappeared” children abducted in war; however, no protocol exists for use of living children’s DNA to reunify
families. We can learn from past contexts to develop strategies for securing sensitive samples and data from
secondary misuse. We aim to define the scope of current and prior humanitarian use of children’s DNA data to
analyze: (a) the contexts in which children’s DNA data are or have been used; (b) the role of DNA in each
context; and (c) the extent to which DNA data advances or harms children’s interests. We will interview key
informants to capture nuanced scenarios within each context to record factors related to risks and benefits of
children’s DNA data use, and apply framework analyses to describe utilities and pitfalls of children’s DNA data
use. We also will identify and interview key allies and experts with expertise on age-appropriate consent
processes. Interview data will provide insight into principles of consenting children for DNA use for reunification
across developmental stages. Finally, we will host a one-day virtual summit among allies and experts that will
involve facilitated dialogue and visual mapping to identify and deliberate the contentious matters in consenting
for children’s DNA use for reunification. Based on the summit discussions, we will formulate and visualize a set
of informed consent principles for children’s DNA use for family reunification. Findings will have immediate
impact for informing protocols and policy, and can prompt further research, including the immediate next step
of conducting a modified-Delphi and implementation study to determine and test application of best practices
for children’s DNA data use for family reunification. Achieving these aims will contribute to structuring an
ethically sound DNA family reunification response that can be activated quickly when needed.

Grant Number: 1R21HG013916-01A1
NIH Institute/Center: NIH
Principal Investigator: Elizabeth Barnert