Is my sick child healthy? Is my healthy child sick?: changing parental experiences of cystic fibrosis in the age of expanded newborn screening.
作者： Rachel Grob
DOI: 10.1016/J.SOCSCIMED.2008.06.003
关键词: Public health 、 Pregnancy 、 Feeling 、 Disease 、 Genetic testing 、 Pediatrics 、 Population 、 Young adult 、 Newborn screening 、 Medicine
摘要: This paper explores how rapid growth in the USA of mandatory newborn screening (NBS) leading to a diagnosis of cystic fibrosis is changing, for affected families, their experience of …
elsevier.com
sci-hub.se 参考文章(35)
Scott D Grosse, Coleen A Boyle, Jeffrey R Botkin, Anne Marie Comeau, Martin Kharrazi, Margaret Rosenfeld, Benjamin S Wilfond, None, Newborn screening for cystic fibrosis: evaluation of benefits and risks and recommendations for state newborn screening programs. Morbidity and Mortality Weekly Report. ,vol. 53, pp. 1- 36 ,(2004)
Elaine H. Walizer, Patricia Taner Leff, Building the healing partnership : parents, professionals & children with chronic illnesses and disabilities Brookline Books. ,(1992)
William G. Rothstein, Readings in American Health Care: Current Issues in Socio-Historical Perspective ,(1995)
Sarah Nettleton, The Sociology of Health and Illness ,(2006)
Alan R. Petersen, Deborah Lupton, The new public health: Health and self in the age of risk ,(1996)
Gary L. Albrecht, Susan C. Scrimshaw, Ray Fitzpatrick, The Handbook of Social Studies in Health and Medicine ,(2003)
Rayna Rapp, Testing women, testing the fetus ,(1999)
Benjamin S. Wilfond, Sarah E. Gollust, Policy issues for expanding newborn screening programs: The cystic fibrosis newborn screening experience in the United States The Journal of Pediatrics. ,vol. 146, pp. 668- 674 ,(2005) , 10.1016/J.JPEDS.2004.11.029
Juliet M. Corbin, Anselm Strauss, Grounded Theory Research: Procedures, Canons and Evaluative Criteria Zeitschrift Fur Soziologie. ,vol. 19, pp. 418- 427 ,(1990) , 10.1007/BF00988593
MONICA KONRAD, Predictive genetic testing and the making of the pre-symptomatic person: Prognostic moralities amongst Huntington's-affected families. Anthropology & Medicine. ,vol. 10, pp. 23- 49 ,(2003) , 10.1080/13648470301269