Addressing language barriers in access to genetic testing under the United States 21st Century Cures Act

The Final Rule of the 21st Century Cures Act (“Cures”) in the United States, which healthcare professionals (HCPs) were required to comply with starting in 2021, transformed clinical care by providing patients with immediate electronic access to their medical records. This often included the option to view their genetic testing results before discussing them with HCPs. “Cures” overarching goal was to enhance healthcare access and empower patients. However, a crucial limitation within the implementation of this legislation is the absence of language concordance in the dissemination of test results. While immediate access to test results may be a significant advancement, these results are predominantly offered in English, creating a formidable barrier for patients with limited English proficiency (LEP), exacerbating healthcare inequities. Consequently, this has the potential for misinterpretations, misdiagnoses, and inappropriate medical interventions. There is an urgent need to provide accessible, culturally sensitive, and language concordant genetic testing and counseling services, especially as results may also carry a direct impact on family members' medical management. This paper underscores the importance of recognizing that the issue extends beyond the availability of genetic testing results; it exemplifies a broader systemic challenge that disenfranchises patients with LEP, limiting their ability to comprehend and engage effectively with their healthcare. This paper advocates for the role of genetic counselors in developing and implementing solutions that bridge the language gap and promote equitable access to genetic healthcare. By leveraging our advocacy skills, genetic counselors can contribute to positive changes that benefit patients with LEP, ensuring that the promise of “Cures” is realized for patients of all linguistic backgrounds.