An analysis of direct‐to‐consumer genetic testing portals and their communication of health risk and test limitations

Direct-to-consumer (DTC) genetic testing has become incredibly popular for assessing health risk related to specific diseases. However, how this risk is conveyed and whether the limitations of the tests are fully communicated can impact how customers interpret results. Through a qualitative content analysis of three different DTC genetic testing online portals, we examine how companies communicate relative and absolute health risks, the extent to which limitations are communicated, and how this information is presented. Findings suggest that relative risk was more prominently communicated than absolute risk and that it was used to organize and prioritize results. Further, risk information was often communicated using statistical terms and concepts that may not be accessible to all users. Test limitations that were communicated included the inability to diagnose a disease, the importance of lifestyle factors, and that the tests do not account for all genetic variants. Although companies included this information, it was not visually prominent.

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Publication Details

Journal
Journal of Genetic Counseling
Published
2024-09-15
DOI
https://doi.org/10.1002/jgc4.1967
Citations
2
Primary Topic
BRCA gene mutations in cancer
Type
article
Field-Weighted Citation Impact
1.10

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article

An analysis of direct‐to‐consumer genetic testing portals and their communication of health risk and test limitations

Nicole Lee, Kaylynne Wallace, Matthew S. VanDyke, Alan Abitbol et al.
2 citations
Journal of Genetic Counseling
BRCA gene mutations in cancer
1.10
article

An analysis of direct‐to‐consumer genetic testing portals and their communication of health risk and test limitations

Nicole Lee, Kaylynne Wallace, Matthew S. VanDyke, Alan Abitbol, Christina Meneses
article en
2 citations

Abstract

Direct-to-consumer (DTC) genetic testing has become incredibly popular for assessing health risk related to specific diseases. However, how this risk is conveyed and whether the limitations of the tests are fully communicated can impact how customers interpret results. Through a qualitative content analysis of three different DTC genetic testing online portals, we examine how companies communicate relative and absolute health risks, the extent to which limitations are communicated, and how this information is presented. Findings suggest that relative risk was more prominently communicated than absolute risk and that it was used to organize and prioritize results. Further, risk information was often communicated using statistical terms and concepts that may not be accessible to all users. Test limitations that were communicated included the inability to diagnose a disease, the importance of lifestyle factors, and that the tests do not account for all genetic variants. Although companies included this information, it was not visually prominent.

Journal of Genetic CounselingVol. 34(2)
University of Alabama (US), Arizona State University (US), University of Tampa (US)
Directorate for Social, Behavioral and Economic Sciences
Openalex Percentile: Top 19%
BRCA gene mutations in cancer
1.10
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An analysis of direct‐to‐consumer genetic testing portals and their communication of health risk and test limitations — Nicole Lee, Kaylynne Wallace, et al. · Journal of Genetic Counseling (2024) | TGRS Research Map | TGRS