Community Genetics screening in a pandemic: solutions for pre-test education, informed consent, and specimen collection.

ABSTRACT: A Community Genetics carrier screening program for the Jewish community has operated on-site in high schools in Sydney (Australia) for 25 years. During 2020, in response to the COVID-19 pandemic, government-mandated social-distancing, 'lock-down' public health orders, and laboratory supply-chain shortages prevented the usual operation and delivery of the annual testing program. We describe development of three responses to overcome these challenges: (1) pivoting to online education sufficient to ensure informed consent for both genetic and genomic testing; (2) development of contactless telehealth with remote training and supervision for collecting genetic samples using buccal swabs; and (3) a novel patient and specimen identification 'GeneTrustee' protocol enabling fully identified clinic

SUBMITTER: Terrill B 

PROVIDER: S-EPMC9832404 | biostudies-literature | 2023 Mar

REPOSITORIES: biostudies-literature