An Accessible Communication System for Population-Based Genetic Testing: Development and Usability Study

Tara Coffin, Deborah Bowen, Elizabeth Swisher, Karen Lu, Nadine Rayes, Barbara Norquist, Stephanie Blank, Douglas Levine, Jamie Bakkum-Gamez, Gini Fleming, Olufunmilayo Olopade, Alan D’Andrea, Denise Nebgen, Christine Peterson, Mark Munsell, Kathleen Gavin, Rebecca Lechner, Jamie Crase, Deborah Polinsky, Iris Romero

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

Abstract

Background: Genetic testing uptake is low, despite the well-established connection between pathogenic variants in certain cancer-linked susceptibility genes and ovarian cancer risk. Given that most major insurers cover genetic testing for those with a family history suggestive of hereditary cancer, the issue may lie in access to genetic testing. Remotely accessible web-based communication systems may improve awareness, and uptake, of genetic testing services. Objective: This study aims to present the development and formative evaluation of the multistep web-based communication system required to support the implementation of, and access to, genetic testing. Methods: While designing the multistep web-based communication system, we considered various barriers and facilitators to genetic testing, guided by dimensions of accessibility. In addition to conducting usability testing, we performed ongoing assessments focusing on the function of the web-based system and participant response rates, with the goal of continuing to make modifications to the web-based communication system as it is in use. Results: The combined approach of usability testing and expert user experience consultation resulted in several modifications to the multistep web-based communication system, including changes that related to imagery and content, web accessibility, and general organization of the web-based system. All recommendations were made with the goal of improving the overall accessibility of the web-based communication system. Conclusions: A multistep web-based communication system appears to be an effective way to address many potential barriers to access, which may otherwise make genetic testing difficult for at-risk individuals to participate in. Importantly, some dimensions of access were easy to assess before study recruitment, but other aspects of the communication system required ongoing assessment during the implementation process of the Making Genetic Testing Accessible study.

Original languageEnglish
Article numbere34055
JournalJMIR Formative Research
Volume6
Issue number10
DOIs
StatePublished - Oct 2022

Keywords

  • accessibility
  • genetic testing
  • internet
  • social media

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