Genetic testing, particularly for BRCA1 and BRCA2, has an increasing role in prostate cancer (PCa) management, screening, and hereditary cancer risk assessment [1-4]. Up to 12%-15% of metastatic disease and 5%-7% of early stage disease involve inherited genetic mutations in cancer risk genes [5,6]. PCa is the leading cancer diagnosed in US men, and inherited PCa impacts thousands of men [7]. Furthermore, hereditary cancer has important implications for family members, informing additional cancer risks and screening measures. Importantly, recommendations for PCa genetic testing have significantly expanded to include a large subset of men with or at risk for PCa [1,3,4]. For men with metastatic, castration-resistant PCa who carry BRCA mutations, the FDA has approved 2 poly-ADP ribose polymerase (PARP) inhibitors as targeted therapy after progression on standard therapy [8-10]. BRCA mutation status is also included in guidelines for PCa screening [4], and men with BRCA2 mutations have more reclassification during active surveillance for favorable-risk disease [11].

Despite the importance of genetic factors in PCa management and hereditary cancer risk, the extent of public awareness is unclear. Previous studies have shown that public awareness and social media discourse are substantially greater for breast cancer compared with PCa [12,13]; however, these studies did not investigate discussions about genetics. Breast cancer is the leading cancer diagnosis among US women [7], and is a useful comparator for PCa because both can be inherited, and genetic mutations in BRCA1/2 also affect screening and treatment recommendations in breast cancer [4,14].

As much as 3 in 4 US adults use 1 or more social media sites [15]. People increasingly use social media to look for health information, share their experiences, and communicate with others, which ultimately impacts their health beliefs and behaviors [16-18]. Social media provides unique insights into how people talk about, behave, and look for an array of health topics. These data have been used to inform prevention programming and messaging, and to scale-up prevention efforts and increase reach [19,20].

This topic is important, as recent data suggest that germline testing is underutilized in PCa [21], and that participating in social networks influences clinical decision making and health behaviors among patients with PCa [22]. From prevention, to treatment, to survivorship, social media provides an important space for communities and the general public to learn and share information about cancer and cancer prevention [20,23-25].

Our objective was to examine the current social media landscape regarding BRCA and genetic testing in PCa relative to breast cancer to provide insights into public awareness and inform strategies to enhance dissemination.

We characterized activity and engagement across multiple social media platforms (Twitter, Facebook, and YouTube) regarding BRCA and #genetictesting for PCa compared with breast cancer.

Our results show substantial discussion about BRCA and genetic testing on popular social networks, although with more participation and engagement for breast cancer than PCa. This corroborates previous studies showing that PCa in general has less social media engagement [12,13], and raises less funding through crowdfunding than breast cancer [30]. Since PCa germline testing guidelines have expanded [3,4], thousands of men are eligible for testing, which may inform management and hereditary cancer risk. As the majority of adults look online for health information and social media use among older adults continues to rise [15,31], a lack of social discourse about PCa and genetic testing may hinder men from knowing that this option is available.

Our results raise concern for modest social media activity and participation, and lack of public awareness about the importance of PCa germline testing; follow-up studies are needed to determine whether this is hindering the impact of genetic advances. Future research is also warranted to draw from the greater social media experience in breast cancer, and to examine the potential for targeted social media campaigns to increase awareness and uptake of genetic evaluation for PCa.

A positive finding of the study was the minimal presence of misinformation on Twitter related to genetic testing and BRCA in breast cancer or PCa. This is in stark contrast to previous studies suggesting a substantial amount of misinformation about PCa on other social networks such as YouTube [28]. A possible explanation was the high proportion of tweets from health care professionals and foundations.

A limitation of this study is that only a subset of social media platforms and posts including these specific hashtags/search terms was evaluated. Additionally, coding of certain variables, such as perceived gender and race/ethnicity, is inherently subjective. Strengths include the first landscape analysis of social media activity related to BRCA and genetic testing in PCa, compared with breast cancer. These data are useful to inform public awareness strategies. Although YouTube is the largest overall video-sharing network, we found that videos about genetic testing had greater reach on Facebook, suggesting that it should be used to disseminate video content to the public. In addition, we found that Twitter is a valuable resource to follow research updates about germline testing for health care professionals and other stakeholders.

In conclusion, there is substantially less social media activity regarding BRCA and genetic testing in PCa relative to breast cancer. These results highlight a major need to increase public awareness and support for genetic testing for PCa to enhance the impact of the precision medicine era.