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

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 appli...

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Autores principales: Jujjavarapu, Chethan, Anandasakaran, Jeevan, Amendola, Laura M., Haas, Cameron, Zampino, Elizabeth, Henrikson, Nora B., Jarvik, Gail P., Mooney, Sean D.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7788871/
https://www.ncbi.nlm.nih.gov/pubmed/33407467
http://dx.doi.org/10.1186/s12920-020-00864-0
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author Jujjavarapu, Chethan
Anandasakaran, Jeevan
Amendola, Laura M.
Haas, Cameron
Zampino, Elizabeth
Henrikson, Nora B.
Jarvik, Gail P.
Mooney, Sean D.
author_facet Jujjavarapu, Chethan
Anandasakaran, Jeevan
Amendola, Laura M.
Haas, Cameron
Zampino, Elizabeth
Henrikson, Nora B.
Jarvik, Gail P.
Mooney, Sean D.
author_sort Jujjavarapu, Chethan
collection PubMed
description 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.
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spelling pubmed-77888712021-01-07 ShareDNA: a smartphone app to facilitate family communication of genetic results Jujjavarapu, Chethan Anandasakaran, Jeevan Amendola, Laura M. Haas, Cameron Zampino, Elizabeth Henrikson, Nora B. Jarvik, Gail P. Mooney, Sean D. BMC Med Genomics Software 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. BioMed Central 2021-01-06 /pmc/articles/PMC7788871/ /pubmed/33407467 http://dx.doi.org/10.1186/s12920-020-00864-0 Text en © The Author(s) 2021 Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Software
Jujjavarapu, Chethan
Anandasakaran, Jeevan
Amendola, Laura M.
Haas, Cameron
Zampino, Elizabeth
Henrikson, Nora B.
Jarvik, Gail P.
Mooney, Sean D.
ShareDNA: a smartphone app to facilitate family communication of genetic results
title ShareDNA: a smartphone app to facilitate family communication of genetic results
title_full ShareDNA: a smartphone app to facilitate family communication of genetic results
title_fullStr ShareDNA: a smartphone app to facilitate family communication of genetic results
title_full_unstemmed ShareDNA: a smartphone app to facilitate family communication of genetic results
title_short ShareDNA: a smartphone app to facilitate family communication of genetic results
title_sort sharedna: a smartphone app to facilitate family communication of genetic results
topic Software
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7788871/
https://www.ncbi.nlm.nih.gov/pubmed/33407467
http://dx.doi.org/10.1186/s12920-020-00864-0
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