Date of Award

5-2024

Document Type

Thesis - Closed Access

Degree Name

MS in Human Genetics

First Advisor

Radhika Sawh

Abstract

Hematology is a newly emerging subspecialty in genetic counseling. In order to improve and standardize practice, it is crucial to characterize the role of genetic counselors (GCs) working in this space. To date, no such characterization has been established. The purpose of this study was twofold: (1) to gain insights into the roles and perspectives of practicing hematology GCs and (2) to assess whether non-hematology GCs perceived a value in having designated hematology GCs at their institutions. A 54-question survey was distributed through the National Society of Genetic Counselors (NSGC) listserv. 92 responses were received, of which 84 participants met the inclusion criteria. When compared to their non-hematology GCs counterparts, this study found that GCs in hematology felt significantly less prepared by their graduate training. Both clinical and non-clinical hematology GCs typically spent more than 30% of their time working with indications such as hemolytic anemia and cytopenias; whereas non-hematology GCs felt least equipped to work with those indications. The majority of non-hematology GCs perceived value in having a designated hematology GC at their institution(s), citing limited capacity to see all hematological indications. The results from this study helped characterize the roles of hematology GCs and emphasized the need for dedicated resources and expertise to address patient needs in this subspecialty. Furthermore, the findings suggested that GCs emerge from graduate programs prepared for the tasks common to other GCs roles while hematology specialty knowledge is typically acquired on the job.

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