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Is my sick child healthy? Is my healthy child sick? Changing parental experiences of cystic fibrosis in the age of expanded newborn screening
- Author:
- GROB Rachel
- Journal article citation:
- Social Science and Medicine, 67(7), October 2008, pp.1056-1064.
- Publisher:
- Elsevier
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 illness versus disease. Qualitative research comparing newborn screening and post-symptomatic diagnostic experiences suggests a number of potent consequences associated with affixing a disease diagnosis through newborn screening. The early, unsought diagnosis deeply affects parents' feeling of competence to care for their newborn and their sense of who the child is, and places the disease – rather than the process of “falling in love with” the new baby – at centre stage during the child's early weeks and months; and causes health professionals to loom very large in the family's life at this formative time. With newborn genetic screening continuing to expand rapidly in the USA for a range of other conditions that may not be immediately symptomatic, we can expect that the newborn period will be significantly altered in these ways for a growing segment of the population.
Genetic screening as a technique of government: the case of neonatal screening for cystic fibrosis in France
- Author:
- VAILLY Joelle
- Journal article citation:
- Social Science and Medicine, 12(63), December 2006, pp.3092-3101.
- Publisher:
- Elsevier
The biomedicalization process and the rise of genetics that have occurred in the last few decades raise political issues concerning the ability of subjects in biomedicine to act and make choices. My work examines these issues through a study of the process by which neonatal screening for the genetic disease of cystic fibrosis (CF) was set up in France. It draws on qualitative interviews with 25 national officials making use of the Foucauldian notion of government, which implies power relations among entities recognized as subjects of action. I examine how different agents (or groups) came to form either governing or governable entities within this health policy, and by what means governance in this area is exercised. The study positions relations between governors and the governed in the dynamics specific to them, showing that screening for CF is, to a large degree, a political technique for governing self and others based on a biomedical technique. Two types of subject (a professionals’ association and a patients’ association) are seen to be constituted in different ways and endowed with more or less extensive power. More generally, the study raises the question of the form of the political, through the example of genetic screening.
Our family, our future: 30 families with disabled children tell their stories
- Author:
- CONTACT A FAMILY
- Publisher:
- Contact a Family
- Publication year:
- 2009
- Pagination:
- 68p.
- Place of publication:
- London
Thirty families from across the UK whose children are affected by a range of disabilities tell their story. Parents talk about their children's achievements, acknowledge the challenges, reflect on their aspirations and fears for the future.