The Need For Racial And Ethnic Health Disparity Curriculum In Genetic Counseling Programs

Author

Yusra Aziz, The University of Texas MD Anderson Cancer Center UTHealth Houston Graduate School of Biomedical SciencesFollow

Author ORCID Identifier

0009-0000-9435-6814

Date of Graduation

5-2023

Document Type

Thesis (MS)

Program Affiliation

Genetic Counseling

Degree Name

Masters of Science (MS)

Advisor/Committee Chair

Claire N. Singletary, M.S., C.G.C.

Committee Member

Jennifer M. Reyes, Ph.D.

Committee Member

Syed Hashmi, M.D., Ph.D.

Committee Member

Aarti Ramdaney, M.S., C.G.C.

Committee Member

Myla Ashfaq, M.S., C.G.C.

Committee Member

Victoria Wagner, M.S., C.G.C.

Abstract

Racial and ethnic health disparities (REHD) exist across all organized medicine, including the spectrum of genetic counseling, particularly in genomic testing and access to care. While cultural competency and health disparities have been included as a part of the Standards of Accreditation for Genetic Counseling, there have not been previous efforts to define what topics related to REHD are most important to include in graduate program curriculum. Therefore, this study aimed to determine what topics related to REHD should be taught in genetic counseling program curriculum by assessing what topics genetic counselors (GCs) learned about and in what settings, what topics they find important, and how they define REHD in genetic counseling. A total of 182 practicing GCs were recruited via multipronged snowball recruitment strategy to participate in an IRB approved (HSC-GEN-22-0561) anonymous online survey in Qualtrics (v 17.1 Qualtrics, Provo, UT). Data was analyzed using descriptive statistics and Fisher exact, Chi-squares, and logistic regression model for comparisons in STATA v14.1 and open-ended responses were coded using inductive content analysis to determine themes. Results showed that Racial and Ethnic Minoritized (REM) GCs have greater familiarity with REHD topics earlier in their careers due to their lived experience, including racism (OR 15.37, 95% CI 3.27-72.40) and cultural humility (OR 6.76, 95% CI 2.57-1.779). GCs who graduated in 2014 or prior were less likely to learn about REHD topics in graduate training than more recent graduates, such as implicit bias (OR 5.25, 95% CI 1.97-14.03). GCs prioritized 21 topics across three areas as important to genetic counseling training: (1) definitions and foundational concepts such as privilege and social determinants of health, (2) genetic counseling, genetic testing and genomics areas, including frequency of variant of uncertain significance results and population bias in polygenic risk scores, and (3) historical and political topics related to marginalized groups, such as the history of the eugenics movement and reproductive justice and policies. In open ended responses, most GCs expressed needing education on examples of disparities and ways to combat these disparities. REM GCs expressed some further nuanced views of the need for historical context of medical racism and self-reflection practices about bias and privilege. The results of this study provide a foundation upon which major genetic counseling organizations can come together to create a consensus curriculum on REHD topics for genetic counseling.

Keywords

Public Health, Health Disparities, Racial & Ethnic Health Disparities, Genetic Counseling, Public Health Curriculum, Genetic Counselors, Genetic Counseling Program Curriculum, Higher education curriculum, National Society of Genetic Counselors, Accreditation Council for Genetic Counseling