Debra Skinner

Ph.D.
University of North Carolina at Chapel Hill ; FPG Child Development Institute; Senior Research Scientist Emerita

Institution(s):

University of North Carolina at Chapel Hill
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Methods

Ethnography
Qualitative Methods
Mixed Methods

Disciplines

Anthropology

Areas of Expertise

Medical Anthropology
Sociocultural implications of genetic/genomic research and diagnostic medicine
Newborn screening

Publications

Parents’ perceptions of personal utility of exome sequencing results
Prenatal exome sequencing in anomalous fetuses: New opportunities and challenges
The nuanced negative: Meanings of a negative diagnostic result in clinical exome sequencing
Experiences with obtaining informed consent for genomic sequencing
“Not tied up neatly with a bow”: Professionals’ challenging cases in informed consent for genomic sequencing
Flexible positions, managed hopes: The promissory bioeconomy of a whole genome sequencing cancer study
Newborn, carrier, and early childhood screening recommendations for Fragile X
Caregiver opinions about fragile X population screening
Negotiating desires and options: How mothers who carry the Fragile X gene experience reproductive decisions
Enacting genetic responsibility: Experiences of mothers who carry the fragile X gene
Emerging dilemmas in newborn screening
How parents search, interpret, and evaluate genetic information obtained from the internet
Supporting family adaptation to presymptomatic and "untreatable" conditions in an era of expanded newborn screening
Ethical, legal, and social concerns about expanded newborn screening: Fragile X Syndrome as a prototype for emerging issues
Newborn screening for developmental disabilities: Reframing presumptive benefit
Screening for fragile X syndrome: Parent attitudes and perspectives
Changing perspectives on the benefits of newborn screening
Possibly positive or certainly uncertain?’: Participants’ responses to uncertain diagnostic results from exome sequencing
Age and perceived risks and benefits of preventive genomic screening

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