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

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


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.

Publication types

  • Research Support, Non-U.S. Gov't
  • Research Support, N.I.H., Extramural

MeSH terms

  • Adolescent
  • Adult
  • Comprehension
  • Decision Making*
  • Education, Distance*
  • Female
  • Genetic Testing*
  • Genomics
  • Humans
  • Informed Consent / psychology*
  • Internet*
  • Male
  • Middle Aged
  • Surveys and Questionnaires*
  • Trust
  • Young Adult