The role of the genetic counselor in newborn screening follow-up services: Recommendations regarding genetic counselor roles and education in anticipation of increased population-based screening

This research elucidates current genetic counseling roles in newborn screening (NBS) follow-up and identifies future uses of the masters-level genetic counselor skill set in various NBS follow-up capacities. The data collected through qualitative interviews with NBS follow-up coordinators and NBS genetic counselors highlight areas of strength and weakness in both the structure of NBS follow-up services and the genetic counseling training curricula. These may inform the future as population screening and genetics increasingly intersect and the genome becomes more accessible to the population. This study addresses whether current and future genetic counseling roles necessitate the creation of new NBS follow-up roles/frameworks, changes in graduate school/professional curricula, changes in the education of clinicians and non-clinicians in NBS, and whether the creation of a subspecialty in NBS genetic counseling would improve patient care. Specific recommendations to those who design graduate school curricula and administer the NBS public health infrastructure are made.