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Genet Med. 2016 May;18(5):501-12. doi: 10.1038/gim.2015.118. Epub 2015 Sep 3.

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

Author information

1
Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
2
Institute of Personalized Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
3
Department of Emergency Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA.

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.

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).

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.

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.

PMID:
26334178
PMCID:
PMC4857185
DOI:
10.1038/gim.2015.118
[Indexed for MEDLINE]
Free PMC Article

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