BMC Medical Genomics (Jan 2021)

ShareDNA: a smartphone app to facilitate family communication of genetic results

  • Chethan Jujjavarapu,
  • Jeevan Anandasakaran,
  • Laura M. Amendola,
  • Cameron Haas,
  • Elizabeth Zampino,
  • Nora B. Henrikson,
  • Gail P. Jarvik,
  • Sean D. Mooney

DOI
https://doi.org/10.1186/s12920-020-00864-0
Journal volume & issue
Vol. 14, no. 1
pp. 1 – 8

Abstract

Read online

Abstract Background Genetic testing allows patients and clinicians to understand the risk of hereditary diseases. By testing early, individuals can make informed medical decisions about management which may minimize the risk of developing certain diseases. Importantly, genetic test results may also be applicable to patients’ biological relatives; thus, these results could also lead to minimizing their risk of disease. However, sharing genetic test results between patients and their relatives is scarce. The most frequently reported problems are that patients cannot clearly explain this information and relatives misinterpret the results. Smartphone apps in the healthcare field are a possible solution as they allow patients to accurately share sensitive information to others, while providing educational material to support understanding the information. However, these apps may not provide security to protect patients’ identifiable information. We developed ShareDNA, a smartphone app that (1) allows patients to securely share their genetic test results with others, (2) provides information on how to interpret these results, and (3) minimizes the amount of patient information needed to use the service. Results We recruited thirteen participants to test the usability of our app and provide feedback. We found overall that participants were comfortable with using this app and could easily learn each app function when filling out our questionnaire. Additionally, based on vocalized impressions of the usefulness of the app, participants indicated that the user-interface could be more intuitive and that we needed to add more text within the app to explain why ShareDNA is a secure service. Conclusions ShareDNA is a free smartphone app that allows patients to share their genetic test results with others, including their biological relatives. Sharing these results along with educational material will enable relatives to share accurate information and discuss their possible risk for disease with their clinical providers. As a result, appropriate testing in relatives could be improved.

Keywords