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

Award Number: R21HG013916
ORGANIZATION: NATIONAL HUMAN GENOME RESEARCH INSTITUTE
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 08/16/2024
PERIOD OF PERFORMANCE END DATE: 07/31/2027

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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.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2026 ( Subtotal = $0 )
2026	2024	UNIVERSITY OF CALIFORNIA, LOS ANGELES	10889 WILSHIRE BLVD STE 700	LOS ANGELES	CA	90024	LOS ANGELES	USA	Human Genome Research	000	1	8/24/2026	NEW	$0
														Subtotal = $0

Issue Date FY: 2024 ( Subtotal = $444,617 )
2024	2024	UNIVERSITY OF CALIFORNIA, LOS ANGELES	10889 WILSHIRE BLVD STE 700	LOS ANGELES	CA	90024	LOS ANGELES	USA	Human Genome Research	000	1	8/16/2024	NEW	$444,617
														Subtotal = $444,617

Grand Total All Awards = $444,617

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

Award Number: R21HG013916

ORGANIZATION: NATIONAL HUMAN GENOME RESEARCH INSTITUTE

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

PERIOD OF PERFORMANCE START DATE: 08/16/2024

PERIOD OF PERFORMANCE END DATE: 07/31/2027

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