In 2015, Maria Chahrour, assistant professor of genetics and neuroscience at the University of Texas Southwestern Medical Center, began recruiting participants for studies on autism genetics out of her lab in Dallas. Among those who responded were parents and families who had recently immigrated from East Africa. They wanted to join the study, but they had some concerns and questions. So they asked if they could form their own group, in which they could help create the rules around how their data would be collected and used.
The collaboration that bloomed from those conversations created the first cohort of African children with autism — one that continues to grow and recruit families around the globe. Chahrour and her research partner, Leah Seyoum-Tesfa, spoke to Spectrum about their experiences forming the cohort and why increasing genetic diversity is vital for autism research. Listen to the interview here, or read the transcript below