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. 2017;20(4):235-246.
doi: 10.1159/000481359. Epub 2017 Oct 26.

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

R Jean Cadigan  1 , Rita Butterfield, Christine Rini, Margaret Waltz, Kristine J Kuczynski, Kristin Muessig, Katrina A B Goddard, Gail E Henderson
Affiliations

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

R Jean Cadigan et al. Public Health Genomics. 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.

Keywords: Electronic consent; Genetic research; Genetic screening; Informed consent.

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Figures

Figure 1
Figure 1
Recruitment and participation outcomes
See this image and copyright information in PMC

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