Highlights
- •There is significant variation in the content of pre-test patient education videos between genetic testing companies.
- •None of the videos reviewed in this study met the standard of care for pre-test genetic counseling.
- •None of the videos addressed disadvantages of genetic testing, possibly due to a conflict of interest.
- •With improvements in content and accessibility, patient education videos may supplement in-person genetic counseling.
Abstract
Objectives
Genetic testing (GT) companies have developed patient education videos to supplement
or replace pre-test genetic counseling (GC) by certified genetic counselors (CGC).
The aim of this study was to assess the quality of these videos compared to the standard
of care (SOC).
Methods
Videos from four major GT companies were selected from an internet search identifying
pre-test patient education videos. A scoring rubric with 22 questions and 36 total
points was devised to assess quality metrics, as described by the National Cancer
Institute and National Society of Genetic Counselors. Twenty-two individuals with
varying genetics expertise (3 gynecologic oncologists, 3 academic generalists, 4 CGC,
a genetics community health worker, 3 cancer care navigators, and 8 medical students)
scored each video. Scorers were blinded to others' assessments.
Results
Invitae had the highest median score (26/36), followed by Myriad (22/36), Ambry (17.5/36),
and Color (15/36). All videos scored highly in explaining DNA basics, cancer development,
and hereditary cancer predisposition. All addressed benefits of GT but failed to address
potential disadvantages. All scored poorly in explaining medical terms and different
GT options. There was variability in addressing patient concerns including cost, privacy,
and procedure.
Conclusions
There is significant variation in the content of pre-test patient education videos
between GT companies. None of the videos met the SOC for pre-test GC, and none addressed
disadvantages of GT, possibly due to a conflict of interest. With improvement in content,
accessibility, and use of interactive platforms, these videos may serve as an adjunct
to in-person pre-test GC.
Keywords
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Article info
Publication history
Published online: February 19, 2021
Accepted:
February 7,
2021
Received:
December 8,
2020
Identification
Copyright
© 2021 Elsevier Inc. All rights reserved.
