Parental information seeking following a positive newborn screening for cystic fibrosis.

This investigation focused on the information-seeking behaviors of parents (N = 38) whose newborn had received a positive screening result for cystic fibrosis. Roughly half of the participants actively sought information about their child's potential disease prior to the clinic visit. The most common sources of information were the Internet, pediatricians, and family physicians. Analysis of behavior during the clinic visit showed rates of question asking that were judged as low, but they were comparable to the results of other studies. It was observed that parents occasionally would collaborate in the production of a single question. More educated parents tended to produce such questions more frequently. Importantly, frequency of collaborative questions was positively correlated with enhanced knowledge of cystic fibrosis six weeks after the clinic visit and with apparent dissatisfaction with the counseling interaction.

An analysis of communication following newborn screening for cystic fibrosis.

With the tremendous expansion of knowledge that will come from advances in the Human Genome Project, the question of how to effectively communicate genetic risk information will assume increasing importance. This article reports research intended to provide a descriptive foundation for future inquiry. Drawing on information from medical professionals and videotaped interactions of families whose infant has tested positive for cystic fibrosis, the authors present an analysis of the phases of communication following newborn screening. From this analysis, it can be seen that genetic counseling is best viewed as part of a larger process of risk communication.