Early Check: Generating Evidence to Inform Newborn Screening for Rare Disorders

Don Bailey, Ph.D., is a Distinguished Fellow at RTI International, where he directs RTI's Center for Newborn Screening, Ethics, and Disability Studies. Prior to joining RTI in 2006, he was W.R. Kenan, Jr. Distinguished Professor and Director of the Frank Porter Graham Child Development Institute at the University of North Carolina at Chapel Hill. His research addresses early identification and early intervention for children with disabilities, as well as family adaptation to disability. For the past 20 years, much of his work has focused on children with fragile X syndrome, the leading inherited cause of intellectual impairment, and their families. He has an extensive record of publications, with more than 240 peer-reviewed articles, chapters, and books on a wide variety of topics related to newborn screening, early intervention, disability, and family support. Currently, he directs several projects funded by the National Institutes of Health on newborn screening and broader issues surrounding the ethical, legal, and social consequences of genetic discoveries and the disclosure of genetic information to families. In 2017 he and his colleagues were funded by NIH to initiate a longitudinal study of children affected by congenital Zika syndrome in Brazil. He serves as RTI's lead partner with UNC-CH on NC TraCS, the North Carolina Clinical and Translational Sciences Institute.