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Development and preliminary evaluation of an online educational video about whole-genome sequencing for research participants, patients, and the general public

Authors :
Sabrina A. Suckiel
Saskia C. Sanderson
Erwin P. Bottinger
Lynne D. Richardson
Ethylin Wang Jabs
Micol Zweig
Source :
Genetics in Medicine
Publication Year :
2015
Publisher :
Nature Publishing Group, 2015.

Abstract

Background: As whole-genome sequencing (WGS) increases in availability, WGS educational aids are needed for research participants, patients, and the general public. Our aim was therefore to develop an accessible and scalable WGS educational aid. Genet Med 18 5, 501–512. Methods: We engaged multiple stakeholders in an iterative process over a 1-year period culminating in the production of a novel 10-minute WGS educational animated video, “Whole Genome Sequencing and You” (https://goo.gl/HV8ezJ). We then presented the animated video to 281 online-survey respondents (the video-information group). There were also two comparison groups: a written-information group (n = 281) and a no-information group (n = 300). Genet Med 18 5, 501–512. Results: In the video-information group, 79% reported the video was easy to understand, satisfaction scores were high (mean 4.00 on 1–5 scale, where 5 = high satisfaction), and knowledge increased significantly. There were significant differences in knowledge compared with the no-information group but few differences compared with the written-information group. Intention to receive personal results from WGS and decisional conflict in response to a hypothetical scenario did not differ between the three groups. Genet Med 18 5, 501–512. Conclusions: The educational animated video, “Whole Genome Sequencing and You,” was well received by this sample of online-survey respondents. Further work is needed to evaluate its utility as an aid to informed decision making about WGS in other populations. Genet Med 18 5, 501–512.

Details

Language :
English
ISSN :
15300366 and 10983600
Volume :
18
Issue :
5
Database :
OpenAIRE
Journal :
Genetics in Medicine
Accession number :
edsair.doi.dedup.....de9641baf34f3ad6b6de77eb22d2bdd6