Genetic Counselors as Research Leaders: A Pragmatic Pathway to Becoming a Federally Funded Principal Investigator in the United States

In the United States, National Institutes of Health (NIH) federally-funded research on the practice of genetic counseling is most often led by Principal Investigators (PIs) who are not genetic counselors (GCs). The aim of this study was to better understand the reasons for this and gain insight into how GCs successfully become PIs of NIH federally-funded research. Using a pragmatic framework, we identified specific skills and supportive pathways that help GCs lead collaborative research. Building on a previously published review of NIH-funded genetic counseling research, the NIH RePORTER database was used to identify GC and non-GC participants. Semi-structured interviews were conducted with GC PIs (n = 9) and non-GC PIs (n = 7). Transcripts were analyzed using inductive content analysis and co-coding. Four overarching categories were identified. 1. Facilitators of GC leadership in NIH-funded research included: varied research roles, institutional resources, mentorship, GC-specific skills and traits, supportive teams, assistance with grant review, training opportunities, and requests for applications (RFA) specific to genetic counseling. 2. Identified barriers included institutional restrictions and priorities, limited time and resources, perceptions of Master's credentials, limited familiarity with the grant process, and low confidence. 3. Participants provided guidance for aspiring GC PIs and 4. GCs discussed the process of becoming a GC PI. Both individual and systemic factors were found to impact research leadership development. GCs pursuing research leadership may benefit from mentorship, employment in settings supportive of research, supplemental training (e.g., grant-writing, research methodology), building a publication record, collaborating with interdisciplinary teams, and adopting a mindset of continual learning. Both GCs and non-GCs can advocate for institutional and funding policy changes. The incorporation of more GCs as PIs on federal grants can ensure that experts in genetic counseling are leading research that has the potential to influence their practice and the profession as a whole.

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Publication Details

Journal
Journal of Genetic Counseling
Published
2026-07-17
DOI
https://doi.org/10.1002/jgc4.70259
Primary Topic
BRCA gene mutations in cancer
Type
article
Field-Weighted Citation Impact
0.00

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article

Genetic Counselors as Research Leaders: A Pragmatic Pathway to Becoming a Federally Funded Principal Investigator in the United States

Heather Zierhut, Simone Hetherington, Rachel Mills
Journal of Genetic Counseling
BRCA gene mutations in cancer
article

Genetic Counselors as Research Leaders: A Pragmatic Pathway to Becoming a Federally Funded Principal Investigator in the United States

Heather Zierhut, Simone Hetherington, Rachel Mills
article en

Abstract

In the United States, National Institutes of Health (NIH) federally-funded research on the practice of genetic counseling is most often led by Principal Investigators (PIs) who are not genetic counselors (GCs). The aim of this study was to better understand the reasons for this and gain insight into how GCs successfully become PIs of NIH federally-funded research. Using a pragmatic framework, we identified specific skills and supportive pathways that help GCs lead collaborative research. Building on a previously published review of NIH-funded genetic counseling research, the NIH RePORTER database was used to identify GC and non-GC participants. Semi-structured interviews were conducted with GC PIs (n = 9) and non-GC PIs (n = 7). Transcripts were analyzed using inductive content analysis and co-coding. Four overarching categories were identified. 1. Facilitators of GC leadership in NIH-funded research included: varied research roles, institutional resources, mentorship, GC-specific skills and traits, supportive teams, assistance with grant review, training opportunities, and requests for applications (RFA) specific to genetic counseling. 2. Identified barriers included institutional restrictions and priorities, limited time and resources, perceptions of Master's credentials, limited familiarity with the grant process, and low confidence. 3. Participants provided guidance for aspiring GC PIs and 4. GCs discussed the process of becoming a GC PI. Both individual and systemic factors were found to impact research leadership development. GCs pursuing research leadership may benefit from mentorship, employment in settings supportive of research, supplemental training (e.g., grant-writing, research methodology), building a publication record, collaborating with interdisciplinary teams, and adopting a mindset of continual learning. Both GCs and non-GCs can advocate for institutional and funding policy changes. The incorporation of more GCs as PIs on federal grants can ensure that experts in genetic counseling are leading research that has the potential to influence their practice and the profession as a whole.

Journal of Genetic CounselingVol. 35(4)
University of Minnesota (US), University of North Carolina at Greensboro (US), Greenwood Genetic Center (US)
University of Minnesota
Openalex Percentile: Top 8%
BRCA gene mutations in cancer
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