Genetic counselling resources in non-english languages: A scoping review

Abstract

Objective: Genetic counselling is essential for individuals seeking genetic or genomic testing. Whereas innovative strategies for GC delivery are being explored to meet the growing demand on the clinical genetics workforce, it is essential to consider the unique needs of culturally and linguistically diverse populations. Methods: We conducted a scoping review to examine the extent, range, and gaps in the body of non-English, patient-facing educational resources available for Limited English Proficient (LEP) patients accessing clinical genetics and genomics services. Results: The literature search returned 246 unique resources, most available in several languages. Forty-six languages were represented, with Spanish, Russian, and French being the most common. Resources were in various formats and were of varying quality. Conclusions: There is a lack of high-quality supplementary genetics education material available in languages other than English, which limits the quality-of-care that LEP families may receive compared to their English-speaking counterparts. Of equal concern is the difficulty in finding existing resources and in determining their quality. Innovation: This research highlights the important need for genetics education material that is of good quality in languages other than English and the challenges associated with identifying this material. A central, curated repository, perhaps sponsored by a genetic counselling organization, would be of great benefit to help genetic counsellors meet the needs of their culturally and linguistically diverse patients.

Keywords

• Genetic counselling
• Genetic testing
• Genomic testing
• Access
• Diversity
• Language