Journal of Genetic Counseling

, Volume 22, Issue 2, pp 218–225

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

Authors

    • Department of Pediatrics and Communicable Diseases, Child Health Evaluation and Research Unit, Division of General Pediatrics, Mott Children’s HospitalUniversity of Michigan
  • Samya Z. Nasr
    • Department of Pediatrics and Communicable Diseases, Cystic Fibrosis Center, Division of Pediatric Pulmonology, Mott Children’s HospitalUniversity of Michigan
  • Jane L. Schuette
    • Division of Pediatric Genetics, Department of Pediatrics and Communicable Diseases, Mott Children’s HospitalUniversity of Michigan
  • Andrew D. Campbell
    • Department of Pediatrics and Communicable Diseases, Pediatric Comprehensive Sickle Cell Program, Division of Pediatric Hematology/Oncology, Mott Children’s HospitalUniversity of Michigan
Original Research

DOI: 10.1007/s10897-012-9537-3

Cite this article as:
Moseley, K.L., Nasr, S.Z., Schuette, J.L. et al. J Genet Counsel (2013) 22: 218. doi:10.1007/s10897-012-9537-3

Abstract

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 < 0.01) and were counseled more frequently by genetic counselors or specialty centers than parents of newborns with SCT (85 % vs. 60 %; p < 0.01). Although physicians agreed that parents whose newborns are carriers should receive genetic counseling, fewer parents of newborns with SCT than with CFC received counseling from any source. This finding strongly suggests the need for further education and investigation of this apparent health disparity.

Keywords

Newborn screening Genetic counseling Sickle cell trait Cystic fibrosis

Abbreviations

SCD

Sickle cell disease

CF

Cystic fibrosis

SCT

Sickle cell trait

CFC

Cystic fibrosis carrier

NCAA

National Collegiate Athletic Association

PCP

Primary care physician

Copyright information

© National Society of Genetic Counselors, Inc. 2012