Debra Skinner


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	*Debra Skinner*

Debra Skinner, PhD, is a Senior Scientist at FPG Child Development Institute, and an Adjunct Associate Professor in the Department of Anthropology at UNC-CH. A cultural anthropologist, she has conducted a number of ethnographic and multi-method longitudinal studies with families from diverse cultural and income groups, examining their understandings of and responses to genetic disorders and childhood disability; and the broader cultural, economic and political contexts of these beliefs and practices. As PI of an ELSI-funded project (“Culture and Family Interpretations of Genetic Disorders”), she conducted an ethnographic study of how families who had a child with a genetic disorder sought out, understood, and used genetic knowledge (including information received during genetic counseling and evaluation sessions) to interpret genetic disorders and to make decisions about reproduction, health, and services. She is currently working with Don Bailey to examine a range of ELSI issues associated with expanded newborn screening, especially for fragile X syndrome.


	*Related Publications*

Skinner, D. (in press). Interdisciplinary research. In L. Given (Ed.), Sage Encyclopedia of Qualitative Research Methods. Sage Publications.

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.

Schaffer, R., Kuczynski K., & Skinner, D. (2008). Producing genetic knowledge and citizenship through the Internet: Mothers, pediatric genetics, and cybermedicine. Sociology of Health and Illness, 30 (1), 145-149.

Skinner, D. and Weisner, T. (2007). Sociocultural studies of families of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews (13), 302 - 312.

Raspberry, K., & Skinner D. (2007). Experiencing the genetic body: Parents’ encounters with pediatric clinical genetics. Medical Anthropology, 26, 355-391.

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.

Skinner, D., & Schaffer, R. (2006). Families and genetic diagnoses in the genomic and Internet age. Infants & Young Children, 19, 16-24.

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

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

Bailey, D. B., Skinner, D., & Sparkman, K.L. (2003). Discovering fragile X syndrome: Family experiences and perceptions. Pediatrics, 111 (2), 407-416.

Skinner, D., Correa, V., Skinner, M., & Bailey, D. (2001). Role of religion in the lives of Latino families of young children with developmental delays. American Journal on Mental Retardation, 106 (4), 297-313.

Bailey, D. B., Skinner, D., Hatton, D. D., & Roberts, J. (2000). Family experiences and factors associated with diagnosis of fragile X syndrome. Journal of Developmental and Behavioral Pediatrics, 21 (5), 315-321.

Skinner, D., Bailey, D. B., Correa, V., & Rodriguez, P. (1999). Narrating self and disability: Latino mothers' construction of identities vis-a-vis their child with special needs. Exceptional Children, 65 (4), 481-495.

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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.