NEW YORK (Reuters Health) - Identification of a healthy infant as a carrier of a cystic fibrosis mutation does not overly distress parents, investigators report. The biggest hurdle these parents face appears to be the need to discuss the findings with family members.
Screening for cystic fibrosis is recommended for newborns in the United Kingdom, Dr. E. P. Parsons and colleagues note in their report, published in the November issue of the Archives of Disease in Childhood Fetal and Neonatal Edition. However, some professionals oppose this policy, because of the potential stigma and the possibility that identification of healthy carriers of the CF mutation will affect the mother/child relationship.
To further explore these issues, Dr. Parsons’ team at the University of Wales College of Medicine in Cardiff conducted a small, prospective pilot study assessing 10 families in which infants were identified as unaffected carriers.
Parents were in favor of newborn screening and appreciated knowing their offspring’s carrier status. There seemed to be no change in parent/child relationships, and parents were no more likely than those of 82 control subjects to become overly anxious, overprotective, or rejecting of their baby.
Dr. Parsons’ group did identify aspects of the screening protocol that could be improved. Health care professionals should be careful to not unduly scare parents when notifying them of initial screening results. For example, they should not go into depth about the disease itself, and they should reassure parents that not all carriers have the disease.
Parents were also concerned about having to discuss the new knowledge with their extended family. The authors recommend that the index family be assisted in this effort, and that they be given written information about the condition and the purpose of cascade screening to pass on to other family members.
Source: Arch Dis Child Fetal Neonatal Ed 2003;88:F467-F471. [ Google search on this article ]
MeSH Headings: Community Health Services : Data Collection : Diagnosis : Diagnostic Services : Environment and Public Health : Epidemiologic Methods : Health Care Facilities, Manpower, and Services : Family Relations : Genetic Screening : Health : Health Occupations : Health Services : Health Services Administration : Health Surveys : Information Science : Mass Screening : Medicine : Investigative Techniques : Mother-Child Relations : Parent-Child Relations : Population Characteristics : Preventive Health Services : Preventive Medicine : Public Health : Quality of Health Care : Specialties, Medical : Public Health Practice : Health Care Quality, Access, and Evaluation : Health Care Evaluation Mechanisms : Diagnostic Techniques and Procedures : Analytical, Diagnostic and Therapeutic Techniques and Equipment : Biological Sciences : Health Care : Information Science Copyright © 2002 Reuters Limited. All rights reserved. Republication or redistribution of Reuters content, including by framing or similar means, is expressly prohibited without the prior written consent of Reuters. Reuters shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon. Reuters and the Reuters sphere logo are registered trademarks and trademarks of the Reuters group of companies around the world.
