Deanne Taylor had no idea a single seminar would change the course of her work. In 2017, at the University of Pennsylvania, a researcher unveiled the Human Cell Atlas, an ambitious project meant to map every cell in the human body. Taylor, then director of bioinformatics at the Children’s Hospital of Philadelphia, was impressed at first. Then she realized the project’s plans only covered adults. “That’s when my little alarm went off,” she recalls. “Not again.”
Since joining CHOP three years earlier, Taylor had grown frustrated by the lack of investment in pediatric medical research. The prevailing assumption, she says, was that children are simply small adults. But they are not. Children’s cells express genes differently, switching them on and off or adjusting their activity in ways that can alter how they respond to drugs, sometimes fatally.
The 2017 talk became the catalyst. Taylor joined the Human Cell Atlas volunteer team, helped write a section on children for the project’s white paper, and rallied a group of pediatric researchers from multiple hospitals. In 2019, she spearheaded a paper making the case for studying children, hoping to attract interest and funding. “It put a flag in the ground,” she says. “Why don’t we have healthy models of children’s development?”
The efforts paid off. In 2021, the National Institutes of Health awarded a $38.5 million grant to the Developmental Genotype-Tissue Expression Project, or dGTEx. The initiative aims to build the first comprehensive database of healthy pediatric tissue. It banks samples from otherwise healthy children who have died and whose parents agreed to donate their bodies. Taylor and her team curate information tied to each donation, including family history and sample details, while another group analyzes the samples themselves. Combined, the data creates a baseline of gene expression in children, offering a first step toward understanding normal development, disease, and drug effectiveness.
The dGTEx data will eventually feed into the Human Cell Atlas, which now includes a pediatric section thanks to Taylor and many coauthors of the 2019 paper.
Colleagues describe Taylor as the glue holding diverse research projects together. “Deanne took a big-picture view and said, We don’t just need to understand the pediatric kidney or the pediatric brain or the pediatric immune system. We need a holistic view of pediatric development,” says Sarah Teichmann, a cofounder of the Human Cell Atlas. “She embodies that interdisciplinary spirit.”
Taylor calls her career a “random walk,” propelled by an intensity she now attributes to undiagnosed autism and ADHD. At five, she was reading her mother’s medical texts. By 12, she was borrowing physics books from the library. She earned a PhD in biophysics in 2001, then, inspired by the Human Genome Project, took a postdoc at Pfizer writing code to handle complex data in rare disease research. She later moved into reproductive medicine, helping develop some of the first computer programs to screen embryos for chromosomal abnormalities, many still in use today.
Through it all, Taylor says her focus has been on why the same illness affects people differently. How can two people carry the same gene variant linked to a disease, yet only one becomes sick? The Human Cell Atlas, with data from dGTEx and other projects, could help find answers. The effort extends the Human Genome Project, which ended in 2003 and linked genes to diseases. But a genome map is like a DIY kit with all the parts and no assembly manual; it doesn’t show where and how cells use each gene.
Gene expression, after all, is the process of making proteins that do specific jobs. Unlike DNA, which stays largely constant, gene expression changes as we develop. These differences can determine whether a therapy works or harms. In children, chemotherapy drugs can attack not just tumors but also developing hearts because of how cardiac genes are expressed. Some treatments trigger cytokine release syndrome, a potentially fatal immune reaction.
The dGTEx database aims to create a baseline for gene expression in children, a molecular map of how roughly 20,000 genes function in healthy tissue. It is one of several collaborations Taylor manages. She is a principal investigator for the Kids First Data Resource Center, which sequences diseased tissues from children in studies nationwide. She is also working with researchers on HubMAP, a complementary effort, to secure funding for 3D maps of children’s cells.
Teichmann stresses that extending such initiatives to children is critical. Astrocytes, key brain cells, form in the first five years; the immune system matures during puberty. “Those changes are really important to understand from a disease point of view,” she says. A granular view of how individual cells work “will change pediatric medicine, for sure.”
Taylor helps keep the dGTEx machine running, coordinating researchers across organizations. A nonprofit group secures tissue samples from deceased children soon after death, CHOP pathologists assess quality, tissues are frozen and stored, and samples go to the Broad Institute for gene expression analysis. Data streams in at every step, which the Human Cell Atlas can eventually draw on.
The coordination is “like herding cats,” says Rebecca Linn, a pediatric pathologist at CHOP, noting that so many individuals have different goals. Taylor says much of her role is mediating, such as explaining to researchers that a one month old’s tiny testes cannot be divided 20 ways.
Colleagues describe Taylor as well connected and able to unite diverse specialties. She has tattoos of Schrödinger’s and Boltzmann’s equations, dabbles in painting and photography, and keeps a nondescript rock from Burning Man, where she volunteered in the kitchen, on her desk. “She can make friends and be memorable through her interests and knowledge,” Linn says. “It really draws you in.”
Taylor believes the work’s potential to change lives is motivation enough. Comparing a sick person’s cells to a healthy baseline for the same age could yield biomarkers for drug targets or diagnostic markers. A pediatric chapter could reveal how adult diseases trace back to signals in childhood, making it possible to screen for and treat chronic conditions years or even decades early. After all, “we’re just older kids,” Taylor says. “By ignoring the pediatric side of things, I think people are missing a window of intervention in human disease.”
Taylor hopes the project will shift how research views pediatrics. It’s a big goal, one that will require big data and forces like her to help pull everything together.