ST. PETERSBURG, Fla. (WFLA) — Johns Hopkins All Children’s Hospital in St. Petersburg received a more than $1 million, five-year grant to study recruitment for organ and tissue donation issues after the loss of a child.
The $1.6 million grant was awarded by the National Institutes of Health for the hospital to “study the ethical, legal, and social implications of approaching families about organ and tissue donation when they have lost a child or their child is managing end of life care,” according to a release from the hospital.
The award is a portion of a larger $12.5 million given by NIH to study gene expression in children’s organs, from the developmental Genome Tissue Expression Project. The multisite study is led by the National Disease Research Interchange in Philadelphia, part of a national effort.
“This study provides an incredible opportunity to include perspectives from culturally and linguistically diverse families, tissue requesters, as well as community partners on a highly sensitive and challenging topic,” says Raquel Hernandez, M.D., M.P.H., FAAP, assistant professor of pediatrics, principal investigator of the research study, and director of the Center for Pediatric Health Equity Research at John Hopkins All Children’s. “Including a 360-degree approach is novel and will give us critical perspectives on best practices related to pediatric tissue donation.”
Among the study’s goals is to help scientists understand the DNA and RNA of pediatric organs and tissue during the various developmental periods as a child grows. The announcement on the grant said prevention and treatment efforts for childhood diseases hinges upon the ability to understand the genetic code in the organs and tissue.
As part of the study at Johns Hopkins All Children’s Hospital, facility staff will interview family decision makers when they consent to donate their child’s tissue and will conduct multilingual surveys and focus groups with family members and survey tissue requesters.
“It is an honor and a privilege to walk with families through a child’s end of life care,” said Melissa Faith, Ph.D., ABPP, board certified, licensed psychologist at Johns Hopkins All Children’s Hospital, assistant professor in the Johns Hopkins University School of Medicine, and co-investigator on the grant. “Families in this situation are often experiencing one of the most vulnerable times of their lives. Our ultimate goal is to learn the most respectful, mindful ways to provide these families with opportunities to participate in genetics research.”
Faith said the hospital is also working to learn how the dGTEx study can procure a diverse sample group, to “enhance health outcomes for all children.” The hospital will work with community organizations to enhance diversity and inclusion during the study.
