Genetics & Justice: Reuniting Families, Fighting Exploitation
The immigration crisis in the United States has continued to worsen since 2014 when a historic surge of unaccompanied children entered the country from Central America. Since then, the number of children has almost tripled to nearly 150,000 unaccompanied children migrating last year, and this is not unique to the United States. According to the U.S. Department of Homeland Security, there are currently more people displaced from their homes around the world than at any time since World War II. Violence, extreme poverty, corruption, the COVID-19 pandemic, climate instability, food insecurity and growing economic distress all contribute to increasing and often traumatic migration.
Many families arrive at the U.S. Southwest border, sometimes with identity documents but too often without. Also too often, children are separated from their families, with those children suffering long-term trauma following even short-term separations. Many people coming to the U.S. Southwest border are exploited by human smugglers who lead families on dangerous crossings. A growing number of migrants die on their journeys. Regardless of the status of U.S. immigration policies, to avoid long-term trauma children should be kept safe with their families when possible and deceased migrants should be returned to families.
As the principal investigator and leader of the Genetics & Justice Laboratory at Lurie Children’s, Sara Huston Katsanis, MS, drives the exploration of policy, science, and ethics of using genomic information for identification purposes.
DNA technologies can offer powerful tools to support children being reunified with their families, to recognize human trafficking and to identify missing persons. Professor Katsanis has the rare ability to combine her genetics knowledge with policy and social science expertise to examine ethical challenges with law enforcement, human rights and genetics.
Her work is unique in its focus on challenges with family reunifications. In the past, justifiable fear of misuse of genetic information limited its use, but Professor Katsanis and her team are applying existing medical ethics and privacy principles to new and growing humanitarian crises. She is working with organizations around the world to develop applications that are ethically sound to the benefit of children and their families.
Every migrant family has a unique situation, and Professor Katsanis is committed to helping families reunify safely and quickly by developing strategies to protect sensitive data from misuse. Her policy development involves cooperation of government, non-profit, and intergovernmental organizations to ensure agreement in data management for humanitarian purposes. At a time when government agencies are challenged with finding solutions to migrant crises, Professor Katsanis and her collaborators are focused on developing best practices for managing DNA data to help families reunify.
Rapid DNA technologies have emerged in the last decade that help protect data privacy, recording genetic details with de-identified names. Non-Government Organizations (NGOs) and other trusted parties can work with families and connect them to social workers for outreach, medical care, and reunifications.
Professor Katsanis is now developing a pilot program with collaborators in El Salvador, working to create a system that will preserve data integrity and plans to pilot a second initiative in Guatemala. Her team has positive relationships with pediatric, genetic and forensic experts in both countries. Closer to home, the Chicago area is fertile ground for Professor Katsanis’ work, with a large immigrant population and growing numbers of unaccompanied children being placed here and throughout the state.
Lurie Children’s mission says, “We are dedicated to the health and well-being of all children.” We are fortunate that Sara Katsanis brings her unique skills and expertise to support the health and well-being of particularly vulnerable children, wherever they are found.