YouTube as an information source on BRCA mutations: implications for patients and professionals

Genetic testing for BRCA1/2 mutations in early breast cancer has been shown to be beneficial, and an increase in surveillance using these genetic markers is recommended. Given this recommendation, it is likely that individuals gather information about such testing. Social media is increasingly becoming a common source of health information. One such platform known for sharing health information is YouTube. The purpose of this study was to describe content related to BRCA1/2 mutations on YouTube. The sample included 100 English language videos, which were coded for content related to BRCA1/2 mutations. The 100 videos evaluated in this study were viewed 5.5 million times. In general, the BRCA1 and BRCA2 gene mutations were mentioned simultaneously, with only 15% of videos explaining the difference in prevalence or implication of the variants individually. A great number of videos (85.0%) discussed having genetic testing to determine the presence of BRCA mutations, but only 16.0% discussed the potential harms of BRCA mutation testing and 42.0% mentioned seeking genetic counseling to determine the need for testing and interpretation of the test results. Comparing the characteristics and content of videos created by healthcare professionals ( n = 71) to those created by consumers and the media ( n = 29), we found that consumer/media videos were viewed twice as many times as professional videos (3,704,351 vs. 1,851,825, p = 0.04). Videos from medical professionals should include consistent information on the recommendations for individuals who test positive for a BRCA mutation. Such content should include education about BRCA mutations, testing, implications of those results and ways to reduce risk, and recommendations for increased surveillance and enhanced screening for individuals positive for BRCA mutations.