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.