ELSIcon2022 Paper: COVID, Prenatal Genetic Testing, and the Digital Divide: Beyond Technology

ELSIcon2022 • Paper • June 2, 2022

Ruth M. Farrell, Christina Collart

COVID and the events of the past year have brought to light the insidious issues of systemic racism, disparities, and inequities that negatively impact healthcare access, safety, and quality. These injustices had specific implications for pregnant patients’ access to prenatal genetic technologies during this time. Unlike other services that could be delayed during the pandemic, prenatal genetic screens and diagnostic tests are time-sensitive, requiring patients to access information about options and navigate the logistics of the healthcare system in a limited time window. While telehealth was seen as a way to ensure timely prenatal care access during COVID, it was an imperfect solution as it amplified the digital divide. This divide was not merely a function of patients’ ability to obtain the appropriate device and  internet access. It extended to issues of trust using telehealth for reproductive healthcare. There were also issues of privacy, not just related to cybersecurity and who might access information exchanged during the telehealth visit but also finding a private space to talk to their provider about reproductive and family history (e.g.; questions about paternity), disability and abortion without children, family, or other household members learning this information. Finally, there were concerns about familiarity with telehealth and the impact on the quality of communication with their provider preventing them from asking important questions to guide their decision-making. From this, it is clear that just and equitable innovation, whether focused on genomics or health information technology, must address the unique ELSI issues of diverse populations.