Genetic Counseling and Patient-Facing Materials
An intake survey was designed to collect participant demographic and health history data, as well as baseline knowledge of and attitudes toward GS (Table 2). Surveys were designed and administered by email using a secure web-based platform called Novi survey (https://novisurvey.net/). The survey was developed based on a general genetics intake and the International Severe Acute Respiratory and emerging Infection Consortium (ISARIC) COVID-19 case report form (URL: https://isaric.org/wp-content/uploads/2021/02/ISARIC-WHO-COVID-19-CORE-CRF_EN.pdf). Medical history questions were reviewed by relevant stakeholders (GC, Geneticists, Nurse Practitioners, Physicians, Biochemists) and selected for inclusion based on applicability to the GENCOV study cohort.
A digital genomics platform is provided to participants before pre-test counseling (www.geneticsadviser.com) (Shickh et al., 2022). A PowerPoint presentation was developed by the study GC for use during pre-test counseling webinars (Supplementary File 2). The content of the presentation was developed to reflect the different categories of SF (medically actionable, drug reactions, PRS for common health conditions, carrier status, and other rare genetic conditions). Additional slides were developed to outline GENCOV-specific information (i.e. how genetic variation relates to COVID-19 susceptibility/symptom severity, logistics about return of results and follow-up). Pre-test counseling webinars are conducted twice weekly using a HIPPA-compliant healthcare Zoom account (zoom.us). Each session is approximately 30 minutes in length and consists of a maximum of 20 participants. Personal Zoom or telephone appointments were also conducted upon request.
A consultation letter (Supplementary File 3) was developed by the study GC with input from relevant stakeholders (i.e. clinical/molecular Geneticist) for the purposes of summarizing pertinent findings from the GS report. For participants who receive results counseling, the consultation letter contains a summary of the discussion with the GC and plans for clinical follow-up if applicable. Consultation letters are forwarded to the family physician and/or referral clinic with a copy of the genomic report with participant consent.