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

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

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

9 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)235-246
Number of pages12
JournalPublic Health Genomics
Volume20
Issue number4
DOIs
StatePublished - Nov 1 2017

Keywords

  • Electronic consent
  • Genetic research
  • Genetic screening
  • Informed consent

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Genetics(clinical)

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