The role of the genetic testing industry in patient education of hereditary cancer: An observational study assessing the quality of patient education videos

D C Greenberg; D Kamara; Z Tatsugawa; M Mendoza; E Pineda; C H Holschneider; M Zakhour

doi:10.1016/j.ygyno.2021.02.013

The role of the genetic testing industry in patient education of hereditary cancer: An observational study assessing the quality of patient education videos

Gynecol Oncol. 2021 May;161(2):516-520. doi: 10.1016/j.ygyno.2021.02.013. Epub 2021 Feb 19.

Authors

D C Greenberg¹, D Kamara², Z Tatsugawa³, M Mendoza³, E Pineda⁴, C H Holschneider⁵, M Zakhour⁶

Affiliations

¹ UCLA David Geffen School of Medicine, Los Angeles, CA, USA; UC Irvine Department of Obstetrics and Gynecology, Orange, CA, USA.
² UCLA David Geffen School of Medicine, Los Angeles, CA, USA; UCLA Department of Obstetrics and Gynecology, Los Angeles, CA, USA.
³ Olive View-UCLA Medical Center, Sylmar, CA, USA.
⁴ UCLA David Geffen School of Medicine, Los Angeles, CA, USA; Olive View-UCLA Medical Center, Sylmar, CA, USA.
⁵ UCLA David Geffen School of Medicine, Los Angeles, CA, USA; UCLA Department of Obstetrics and Gynecology, Los Angeles, CA, USA; Olive View-UCLA Medical Center, Sylmar, CA, USA.
⁶ UCLA David Geffen School of Medicine, Los Angeles, CA, USA; UCLA Department of Obstetrics and Gynecology, Los Angeles, CA, USA; Olive View-UCLA Medical Center, Sylmar, CA, USA. Electronic address: mzakhour@mednet.ucla.edu.

PMID: 33618842
DOI: 10.1016/j.ygyno.2021.02.013

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: Genetic counseling; Genetic testing; Hereditary cancer; Patient education; Telemedicine.

Publication types

Observational Study

MeSH terms

Genetic Counseling / ethics
Genetic Counseling / methods*
Genetic Counseling / standards
Genetic Testing / ethics
Genetic Testing / methods*
Genetic Testing / standards
Humans
Neoplasms / genetics*
Patient Education as Topic / methods*
Patient Education as Topic / standards
Videotape Recording / ethics
Videotape Recording / standards