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Assessing Genetic Counselors’ Current Practice and Perceived Utility of Race, Ethnicity, and Ancestry (REA) Data Collection During Clinical Encounters

Johnson, Shontiara Darnae
http://rave.ohiolink.edu/etdc/view?acc_num=osu1650297292925848

Abstract Details

2022, Master of Science, Ohio State University, Genetic Counseling.
Background: Race, ethnicity, and ancestry (REA) are distinct terms that are often used interchangeably to refer to ascribed social identities. Within the medical setting, REA is commonly collected as demographic information with race and ethnicity being frequently used as surrogates for ancestral background. Currently, patient- or provider-reported REA is being used in biomedical and healthcare research instead of genetic ancestry, which is scientifically interpreted. The utilization of patient- or provider-reported REA in the clinical interpretation of potentially disease-associated variants may result in inaccurate risk assessment. Genetic counselors (GCs) often collect patient-reported REA as part of the pedigree construction process. Methods for obtaining patient-reported REA are currently not well characterized. This study aims to do the following: determine the proportion of genetic counselors who currently collect patient-reported REA during routine genetic counseling encounters, characterize how genetic counselors ask their patients about REA, and describe the characteristics of genetic counselors that do collect REA information as well as those that do not. An additional exploratory aim of investigating whether or not genetic counselors can determine race, ethnicity, and ancestry emerged during survey construction. Methods: 239 board-certified genetic counselors were recruited by electronic means to complete a 20-question online survey assessing GCs’ perception of race, ethnicity, and ancestry, the current practices of GCs, and the demographics of GCs. Data regarding GCs’ REA perception, current practices, and demographics were analyzed using descriptive statistics and chi-squared tests. Statistical analysis was not significant. Results: More participants ask patients for ancestry data (93%) in comparison to ethnicity (65%) or race data (40%). 75% of participants collect REA data from patients directly. Phrases and/or terms associated with “ethnicity”, “country”, and “ancestry” are frequently used to collect patient-reported REA (84%). More GCs were able to define REA terms as the survey progressed as 46% of participants correctly defined race, 71% of participants correctly defined ethnicity, and 93% of participants correctly defined ancestry. Most GCs claim that REA data is collected because genetic testing laboratories require this information on test requisition forms (26%). More than half (56%) of respondents feel that collecting patient REA would not change offered tests or clinical management, although 15% of respondents support that collecting REA is a “best practice”. An appreciable amount (7%) of participants experience discomfort when asking patients for REA data. More than a quarter (28.4%) of participants felt very confident regarding their understanding of race, ethnicity, and ancestry while 2.84% of participants felt very unconfident. More than a third (34%) of participants work in the oncology setting while 16% practice in a prenatal setting. Almost half (45%) of participants were aged 25-29 years and 43% had 1-4 years of experience. Most participants identified their race as White (84%) and 96% of participants identified their ethnicity as non-Hispanic. Of those responses, 10% of participants identified a race as their ethnicity. Conclusions: These results indicate that GCs employ the use of many different words, phrases, and analogies to try to elicit a family history and collect REA data directly from patients. More than half of GCs feel that collecting patient REA would not change the genetic tests they would offer or clinical management, yet an appreciable number of GCs feel that obtaining patient REA data is a genetic counseling “best practice”. There are mixed feelings regarding the collection of patient-reported REA within the genetic counseling field. This exploratory research study serves as a snapshot view that details the current characteristics and clinical practices of genetic counselors. Further characterization of GCs who practice in prenatal and oncology specialties as well as other specialties regarding clinical practices and perceptions of the lack of diversity in genomic research, REA data collection, and health disparities is necessitated. This study can serve as a basis for future research to gain more insight into the interpretations, perceptions, and feelings of genetic counselors regarding these topics as genetic counselors strive to make their interactions with patients more inclusive and meaningful and seek to provide adequate testing and services to an increasingly diverse population of patients.
Jordan Brown (Advisor)
Leigha Senter-Jamieson (Committee Member)
Damara Hamlin (Committee Member)
Vivian Pan (Committee Member)
Barbara Harrison (Committee Member)
71 p.
Genetics; Health Care; Health Sciences
Race, ethnicity, ancestry, genetic counselor, genetic counseling, REA, REA data collection, genetic testing, diversity in genomic research

Recommended Citations

Citations

  • Johnson, S. D. (2022). Assessing Genetic Counselors’ Current Practice and Perceived Utility of Race, Ethnicity, and Ancestry (REA) Data Collection During Clinical Encounters [Master's thesis, Ohio State University]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=osu1650297292925848

    APA Style (7th edition)

  • Johnson, Shontiara. Assessing Genetic Counselors’ Current Practice and Perceived Utility of Race, Ethnicity, and Ancestry (REA) Data Collection During Clinical Encounters. 2022. Ohio State University, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=osu1650297292925848.

    MLA Style (8th edition)

  • Johnson, Shontiara. "Assessing Genetic Counselors’ Current Practice and Perceived Utility of Race, Ethnicity, and Ancestry (REA) Data Collection During Clinical Encounters." Master's thesis, Ohio State University, 2022. http://rave.ohiolink.edu/etdc/view?acc_num=osu1650297292925848

    Chicago Manual of Style (17th edition)

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This open access ETD is published by The Ohio State University and OhioLINK.
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