Don Bailey


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	*Don Bailey*

Don Bailey, Ph.D., is a Distinguished Fellow at RTI International, a non-profit research institute in Research Triangle Park, NC. Prior to joining RTI he was Director of the Frank Porter Graham Child Development Institute and W. R. Kenan, Jr. Distinguished Professor of Education at the University of North Carolina at Chapel Hill, where he retains a joint appointment as Research Professor. His research and publications have addressed a variety of issues related to early intervention for children with disabilities and their families, with a particular focus on family support, inclusion, early identification, and program evaluation. He is author of more than 160 journal articles, books, and chapters. Currently he directs a set of longitudinal studies of children with fragile X syndrome and their families. These studies document the wide-ranging impacts of this disorder, the most common inherited form of mental retardation. He is now planning a multi-state study to screen a large number of newborns for fragile X syndrome. The study will serve as a prototype for how society might address questions that will arise as the Human Genome Project identifies an increasingly large number of genetic disorders for which we have the capacity to screen but no medical cure. Planning efforts are supported by grants from the National Institute on Child Health and Human Development and the Ethical, Legal, and Social Implications Program in the National Human Genome Research Institute. He received the 2002 Research Award from the American Association on Mental Retardation and the 2004 Ben Rosen Research Award from the National Fragile X Foundation. In May, 2006 he received the Distinguished Career Scientist award from the Academy on Mental Retardation.


	*Related Publications*

Bailey, D. (in press) Newborn screening for intellectual disability: past, present, and future. Invited chapter submitted to L. M. Glidden (Ed.), International Review of Research in Mental Retardation, Volume 36. San Diego: Elsevier.

Bailey, D., Armstrong, D., Kemper, A., Skinner, D., & Warren, S. (in press). Supporting family adaptation to pre-symptomatic and “untreatable” conditions in an era of expanded newborn screening. Journal of Pediatric Psychology.

Wheeler, A., Skinner, D., & Bailey, D. B. (in press). Perceived quality of life in mothers of children with fragile X syndrome. American Journal on Mental Retardation.

Bailey, D., Skinner, D., Davis, A., Whitmarsh, I., and Powell, C. (2008). Ethical, legal, and social concerns about expanded newborn screening: Fragile X syndrome as a prototype for emerging issues. Pediatrics, 121 (3), e693-e707.

Whitmarsh, I. A., Davis, D., Skinner, D., & Bailey, D. (2007). A place for genetic uncertainty: Parents valuing the unknown meanings of disease. Social Science and Medicine, 65, 1082-1093.

Bailey, D. B., Beskow, L. M., Davis, A., & Skinner, D. (2006). Changing perspectives on the benefits of newborn screening. Mental Retardation and Developmental Disabilities Research Reviews, 12(4), 270-279.

Bailey, D.B., Skinner, D., & Warren, S. F. (2005). Newborn screening for developmental disabilities: Reframing presumptive benefit. American Journal of Public Health, 95, 1889-1893.

Bailey, D.B. (2004). Newborn screening for fragile X syndrome. Mental Retardation and Developmental Disabilities Research Reviews, 10, 3-10.

Skinner, D., Sparkman, K.L., Bailey, D.B. (2003). Screening for fragile X syndrome: Parent attitudes and perspectives. Genetics in Medicine, 5, 378-384.

Bailey, D.B., Skinner, D., & Sparkman, K. (2003). Discovering fragile X syndrome: Family experiences and perceptions. Pediatrics, 111, 407-416.

Bailey, D.B., Roberts, J.E., Mirrett, P., & Hatton D.D. (2001). Identifying infants and toddlers with fragile X syndrome: Issues and recommendations. Infants and Young Children, 14(1), 24-33.

Bailey, D.B., Skinner, D., Hatton, D., & Roberts, J.E., (2000). Family experiences and factors associated with the diagnosis of fragile X syndrome. Journal of Developmental and Behavioral Pediatrics, 21, 315-321.

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The Center for Genomics and Society is supported by the ELSI Research Program of the National Human Genome Research Institute of the National Institutes of Health, Grant Number P50HG004488.