Have You Seen This?: Implications of Learning About BRCA on YouTube

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Holly Magliochetti

Genetics Institute of America

Genetics Institute of America (GIA) is a national laboratory dedicated to heightening the awareness of early intervention and genetic screening to promote the longevity and quality of life outcomes.  


Have You Seen This? 

Implications of Learning About BRCA on YouTube

DELRAY BEACH, FL  – A new study from researchers at Columbia University examined the content of the 100 most viewed videos on YouTube related to BRCA1/2 mutations and their association with cancer risk.

Most of the videos were produced by healthcare professionals, and they were viewed a total of 5.5 million times. The videos covered various aspects of BRCA mutations, including their association with breast and ovarian cancer, increased risks for other cancers, genetic testing, and risk reduction strategies. However, there were some gaps in the content, such as limited information on the higher prevalence of BRCA mutations in certain racial and ethnic groups, potential harms of genetic testing, and implications of negative or uncertain test results. Consumer and media-generated videos had more views and provided more comprehensive information on certain topics compared to videos created by healthcare professionals. The study suggests the need for more consistent and informative content from medical professionals, addressing recommendations for BRCA mutation-positive individuals and potential difficulties in discussing test results with family members.

The findings of the study highlight the role of YouTube as a platform for disseminating information about BRCA1/2 mutations. However, there are areas that need to be addressed to improve the quality and comprehensiveness of the content. The study suggests the inclusion of recommendations for individuals who test positive for BRCA mutations, information on the higher prevalence of mutations in specific racial and ethnic groups, medical options for mutation carriers, and the risk of BRCA mutations among men. Moreover, videos should provide more content on the potential harms of genetic testing and the implications of negative or uncertain test results, including emotional and psychological impacts, fear of insurance discrimination, and decisions regarding preventive measures. The study also indicates that videos created by healthcare professionals were less comprehensive and informative compared to consumer and media-generated videos. Thus, it emphasizes the importance of consistent and accurate information from medical professionals, covering various aspects of BRCA mutations and providing recommendations for testing, risk reduction, and increased surveillance.

It is important to acknowledge the limitations of the study, including its cross-sectional design, small sample size, and the dynamic nature of online content. However, the study highlights the underexplored area of BRCA-related content on YouTube and calls for further research in this field. Future studies should investigate the factors that attract viewers to specific videos and explore how engaging and accessible professional information can be effectively communicated through various platforms beyond YouTube.

Want to learn more about genetic testing in BRCA-related cancers from an actual provider and make sure you are getting reliable information? Check out the Clinical Education Page to learn more or reach out to our Clinical Education Team. We are here for you!

  1. Laforet PE, Yalamanchili B, Hillyer GC, Basch CH. YouTube as an information source on BRCA mutations: implications for patients and professionals. J Community Genet. 2022;13(2):257-262. doi:10.1007/s12687-022-00576-1
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