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Debra Skinner, PhD, is a Senior Scientist at FPG Child Development Institute, and an Adjunct 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.
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