Affiliation: University of North Carolina
- Parents' decisions to screen newborns for FMR1 gene expansions in a pilot research projectDebra Skinner
FPG Child Development Institute, University of North Carolina at Chapel Hill, Carrboro, NC 27510, USA
Pediatrics 127:e1455-63. 2011....
- Obtaining consent from both parents for pediatric research: what does "reasonably available" mean?Daniel K Nelson
Departments of Social Medicine and Pediatrics, University of North Carolina at Chapel Hill, North Carolina 27599 7097, USA
Pediatrics 131:e223-9. 2013....
- Screening for Fragile X Syndrome: parent attitudes and perspectivesDebra Skinner
FPG Child Development Institute, University of North Carolina at Chapel Hill, 27599-8180, USA
Genet Med 5:378-84. 2003..CONCLUSION: Parents' support for FXS screening is at odds with current screening criteria, but as new genetic knowledge and technologies reconfigure these criteria, it will be important to take parents' perspectives into account...
- Association between smoking and retrospectively reported attention-deficit/hyperactivity disorder symptoms in a large sample of new mothersMichael T Willoughby
FPG Child Development Institute, University of North Carolina at Chapel Hill, Campus Box 8185 521, South Greensboro Street, Carrboro, NC 27510, USA
Nicotine Tob Res 11:313-22. 2009..This study investigated the association between retrospectively reported attention-deficit/hyperactivity disorder (ADHD) symptoms experienced during childhood and five cigarette smoking-related outcomes in adulthood...
- Enacting genetic responsibility: experiences of mothers who carry the fragile X geneKelly Raspberry
Center for Genomics and Society, University of North Carolina, Chapel Hill, NC 27599 7240, USA
Sociol Health Illn 33:420-33. 2011..These mothers' accounts reflect an expanded version of genetic responsibility that incorporates ideas and values beyond managing risk in what it means to act responsibly in light of genetic knowledge...
- Maternal psychological adjustment and knowledge of infant development as predictors of home safety practices in rural low-income communitiesAdam J Zolotor
University of North Carolina, CB 7595, Chapel Hill, NC 27599 7595, USA
Pediatrics 121:e1668-75. 2008..Unintentional injury is the leading cause of death among toddlers in the United States. Toddlers spend the majority of time at home, and the use of recommended safety practices can prevent many injuries...
- Negotiating desires and options: how mothers who carry the fragile X gene experience reproductive decisionsKelly Amanda Raspberry
University of North Carolina Chapel Hill, Center for Genomics and Society, CB 7240, Chapel Hill, NC 27599 7240, USA
Soc Sci Med 72:992-8. 2011....
- A place for genetic uncertainty: parents valuing an unknown in the meaning of diseaseIan Whitmarsh
University of North Carolina, Chapel Hill, NC, USA
Soc Sci Med 65:1082-93. 2007..These multiple and often conflicting evaluations of the diagnostic label reveal the rich ways families make meaning of the authority attributed to genetic diagnosis...
- Narrating disability, narrating religious practice: reconciliation and fragile X syndromeMarsha Michie
Center for Genomics and Society, University of North Carolina Chapel Hill, 27599 7240, USA
Intellect Dev Disabil 48:99-111. 2010..The authors discuss the significance of narrative for better understanding religious perspectives on disability and conclude with the implications of these findings for practitioners and future research...
- Newborn screening for developmental disabilities: reframing presumptive benefitDonald B Bailey
University of North Carolina at Chapel Hill, Chapel Hill, NC 27599 8180, USA
Am J Public Health 95:1889-93. 2005..Newborn screening provides other societal benefits that, in the absence of data showing harm and with appropriate attention to ethical and legal issues, warrant consideration of an expansion of targets for newborn screening...
- How parents search, interpret, and evaluate genetic information obtained from the internetMyra I Roche
Department of Pediatrics, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
J Genet Couns 18:119-29. 2009..Parents' Internet searching experiences illustrate common barriers to obtaining and understanding genetic information. Identifying them can help genetic counselors facilitate parents' searches for relevant information...
- Producing genetic knowledge and citizenship through the Internet: mothers, pediatric genetics, and cybermedicineRebecca Schaffer
Anthropology, University of North Carolina at Chapel Hill, North Carolina, USA
Sociol Health Illn 30:145-59. 2008..This exploration of e-health use contributes to our understanding of the social practices and power relations that cut across online and off-line worlds to co-produce genetic knowledge and genetic citizenship in multiple contexts...
- Sociocultural studies of families of children with intellectual disabilitiesDebra Skinner
FPG Child Development Institute, University of North Carolina, Chapel Hill, NC 27599 8180, USA
Ment Retard Dev Disabil Res Rev 13:302-12. 2007....
- Discovering fragile X syndrome: family experiences and perceptionsDonald B Bailey
Frank Porter Graham Child Development Institute, University of North Carolina at Chapel Hill, 27599, USA
Pediatrics 111:407-16. 2003....