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Online Education and e-Consent for GeneScreen, a Preventive Genomic Screening Study

Authors :
Christine Rini
Margaret Waltz
Kristine J. Kuczynski
Rita M. Butterfield
Gail E. Henderson
Katrina A.B. Goddard
R. Jean Cadigan
Kristin R. Muessig
Source :
Public Health Genomics. 20:235-246
Publication Year :
2017
Publisher :
S. Karger AG, 2017.

Abstract

Background: Online study recruitment is increasingly popular, but we know little about the decision making that goes into joining studies in this manner. In GeneScreen, a genomic screening study that utilized online education and consent, we investigated participants' perceived ease when deciding to join and their understanding of key study features. Methods: Individuals were recruited via mailings that directed them to a website where they could learn more about GeneScreen, consent to participate, and complete a survey. Results: Participants found it easy to decide to join GeneScreen and had a good understanding of study features. Multiple regression analyses revealed that ease of deciding to join was related to confidence in one's genetic self-efficacy, limited concerns about genetic screening, trust in and lack of frustration using the website, and the ability to spend a limited time on the website. Understanding of study features was related to using the Internet more frequently and attaining more information about GeneScreen conditions. Conclusions: The ease of deciding to join a genomic screening study and comprehension of its key features should be treated as different phenomena in research and practice. There is a need for a more nuanced understanding of how individuals respond to web-based consent information.

Details

ISSN :
16628063 and 16624246
Volume :
20
Database :
OpenAIRE
Journal :
Public Health Genomics
Accession number :
edsair.doi.dedup.....de2e0d5fff0b316d06cd43cd44118b72