Implications of carrier identification in newborn screening for cystic fibrosis
- 1Institute of Medical Genetics, University of Wales College of Medicine, Heath Park, Cardiff CF14 4XN, Wales, UK
- 2Department of Medical Biochemistry, University Hospital of Wales, Heath Park, Cardiff CF14 4XW, Wales, UK
- Correspondence to:
Dr Parsons
SONMS, UWCM, Heath Park, Cardiff, Wales CF14 4XN, UK; parsonsepcardiff.ac.uk
- Accepted 13 December 2002
Abstract
Objective: To investigate the psychosocial implications for families whose infant was identified as a cystic fibrosis carrier by newborn screening.
Design: Prospective psychosocial assessment.
Setting: Primary care.
Respondents: Study: (a) families of an affected infant identified by screening (n = 9); (b) families of a carrier infant identified by screening (n = 10). Control: group of mothers from the general population (n = 82).
Interventions: Questionnaires and semistructured interviews.
Main outcome measures: Attitude to screening, assessments of the mother/baby relationship, anxiety, wellbeing.
Results: All families were in favour of screening, with no evidence that the mother/baby relationship, anxiety or wellbeing had been adversely affected. Parents, however, did identify problems in terms of the service delivery protocol and genetic counselling practice.
Conclusion: Six months after disclosure, carrier identification was not perceived by parents to be problematic.
