Time Costs for Genetic Counseling in Preconception Carrier Screening with Genome Sequencing

• Published in: Journal of genetic counseling Vol. 27; no. 4; pp. 823 - 833
• Main Authors: Lynch, Frances L., Himes, Patricia, Gilmore, Marian J., Morris, Elissa M., Schneider, Jennifer L., Kauffman, Tia L., Shuster, Elizabeth, Reiss, Jacob A., Dickerson, John F., Leo, Michael C., Davis, James V., McMullen, Carmit K., Wilfond, Benjamin S., Goddard, Katrina A.B.
• Format: Journal Article
• Language: English
• Published: New York Springer US 01-08-2018; Blackwell Publishing Ltd
• Subjects: Adult; Biomedical and Life Sciences; Biomedicine; Carrier testing; Carriers; Case conferences; Clinical Psychology; Cost analysis; Ethics; Female; Genetic counseling; Genetic Counseling - economics; Genetic screening; Genomes; Genomics; Gynecology; Health care expenditures; Human Genetics; Humans; Male; Medical screening; Mixed methods; Mixed methods research; Original Research; Precision medicine; Preconception; Preconception Care; Pregnancy; Public Health; Technology; Time Factors; Time study; Time use; Whole genome sequencing; Workloads; Time study; Genetic counseling; Preconception; Whole genome sequencing; Mixed methods; Carrier testing
• ISSN: 1059-7700; 1573-3599
• DOI: 10.1007/s10897-017-0205-5

Advances in technology and the promise of personalized health care are driving greater use of genome sequencing (GS) for a variety of clinical scenarios. As health systems consider adopting GS, they need to understand the impact of GS on the organization and cost of care. While research has documented a dramatic decrease in the cost of sequencing and interpreting GS, few studies have examined how GS impacts genetic counseling workloads. This study examined the time needed to provide genetic counseling for GS in the context of preconception carrier screening. Genetic counselors prospectively reported on the time spent in the results disclosure process with 107 study participants who were part of the NextGen study. We found that the median time for results disclosure was 64 min (ranged from 5 to 229 min). Preparation work was the most time-consuming activity. Qualitative data from journal entries, debrief interviews with genetic counselors, and detailed case conference notes provided information on factors influencing time for results disclosure and implications for practice. Results suggest that expanded carrier screening could require significant increases in genetic counseling time, unless we are able to generate new resources to reduce preparation work or develop other strategies such as the creation of new models to deliver this type of service.