Who Counsels Parents of Newborns Who Are Carriers of Sickle Cell Anemia or Cystic Fibrosis?

• Published in: Journal of genetic counseling 2013-04, Vol.22 (2), p.218-225
• Main Authors: Moseley, Kathryn L., Nasr, Samya Z., Schuette, Jane L., Campbell, Andrew D.
• Format: Article
• Language: English
• Subjects: Anemia, Sickle Cell - genetics; Biomedicine; Carriers; Clinical Psychology; Counselling; Cystic fibrosis; Cystic Fibrosis - genetics; Doctors; Ethics; Genetic Carrier Screening; Genetic Counseling; Genetic counselling; Gynecology; Human Genetics; Humans; Infant, Newborn; Newborn babies; Newborn screening; Original Research; Parents; Parents & parenting; Parents - psychology; Primary care; Public Health; Sickle cell anemia; Sickle cell trait
• ISSN: 1059-7700; 1573-3599
• DOI: 10.1007/s10897-012-9537-3

Our objective was to describe: 1) physicians’ knowledge of whether genetic counseling is provided to parents of newborns with sickle cell trait (SCT) or who are cystic fibrosis carriers (CFC), and 2) the prevalence of genetic counseling provided by primary care physicians. We conducted a cross-sectional descriptive survey of 600 randomly-sampled Michigan-based pediatricians and family physicians, assessing physician knowledge of where and whether genetic counseling is received by parents whose newborns are carriers. Chi-squared testing determined associations between genetic counseling location and physician demographic characteristics. Our response rate was 62 %: 298 (84 %) provided infant well care (183 pediatricians, 115 family physicians). Most respondents were non-Hispanic White (65 %). Virtually all physicians believed parents whose newborns are carriers of either SCT or CFC should receive some genetic counseling (from the physician and/or another source), yet 20 % reported that parents of newborns with SCT did not receive counseling. Parents of infants with CFC received more counseling overall (92 % vs. 80 %; p