Exploring genetic counselors' use of pedigree symbols to represent assisted reproductive technology

The standardized pedigree nomenclature recommendations created by the National Society of Genetic Counselors Pedigree Standardization Work Group contains some Assistive Reproductive Technology (ART) specific nomenclature. However, the work groups' recommendations lack instructions on how to document 'the number of embryos conceived, frozen, and implanted, along with their genetic testing history' (Bennett et al., 2008, p. 429). The purpose of this qualitative study was to determine if the current symbols are sufficient for what genetic counselors need in the ART field and how genetic counselors are addressing any gaps. Ten genetic counselors with ART counseling experience participated in semi-structured interviews. Participants reported using standard symbols and creating their own designs when standard symbols are not available for applicable ART situation. Thematic analysis identified seven reasons why participants felt that ART should be recorded on the medical pedigree. The 3 most common themes identified were: (1) medical assessment and facilitating development of a differential diagnosis, (2) clarity and continuity of documentation, and (3) psychosocial assessment of the family and fertility experience. All participants felt that the current nomenclature was not sufficient for their clinical practice and would support additional standard symbols. This study supports the need for development of further pedigree nomenclature inclusive of patients with ART experiences.