Abstract
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.
Introduction
BRCA1 and BRCA2 are tumor suppressor genes. Mutations in these genes create an increased risk for developing certain types of cancers. While both BRCA1 and BRCA2 gene mutations increase the risk of breast cancer, they result in histological differences between associated tumors. The BRCA1 gene mutation is also associated with an increase of ovarian cancer. The BRCA2 gene mutation presents an increased risk of prostate, pancreas, gallbladder, stomach, and male breast cancer (Scully 2000). Not all individuals who have the BRCA1/2 mutation will develop the associated cancers, and likewise, not all individuals with associated cancers have the BRCA1/2 mutation (Centers for Disease Control and Prevention 2021). There is an increased risk for a BRCA mutation if an individual has a family history of cancer or the BRCA mutation. If a parent has the BRCA gene mutation, there is a 50% chance it will get passed down to the child (Centers for Disease Control and Prevention 2021). There is also an associated increased risk based on ancestry. Individuals of Ashkenazi Jewish descent are at greater risk of having the mutation and thus, developing cancer (Giusti et al. 2003). Early detection of cancer is key to increasing survival rates and decreasing mortality. Genetic testing for BRCA1/2 mutations in early breast cancer has been shown to be beneficial, and increase in surveillance using these genetic markers is recommended (Nilsson et al. 2017). Given this recommendation, it is likely that individuals gather information about such testing. This is especially true when issues are given heightened attention by celebrities (Juthe et al., 2015) but researchers warn that such events may be accompanied by incomplete information (Schmidt 2013). Research indicates that information is desired by relatives of women with BRCA 1/2 or PALB2 pathogenic variants (Brédart et al. 2021) and in men with BRCA- cancer risks (Rauscher et al. 2018). Researchers determined that those who seek genetic counseling have motivators and barriers in the information seeking process and that the ability to access and comprehend high quality, reliable information remains problematic (Zimmermann et al. 2021).
Social media usage has increased greatly over the past 15 years among Americans, with over 70% using at least one platform (Pew Research Center 2021). Although social media platforms are available to people of all genders, ages, and races, certain platforms garner different audiences. Based on a 2021 survey, 78% of American women use at least one social media platform, compared to 66% of American men. YouTube and Facebook have audiences that are largely representative of the population and are also the most widely used (Pew Research Center 2021). One factor for increased use of YouTube for health information is the fact that written information is often written in a way that is difficult for the lay public to interpret (Basch et al. 2019).
The impact of platforms like YouTube in spreading public health information to the general public is continuously being studied on varied topics, including those related to cancer (Basch et al. 2015, 2017). YouTube is becoming a source of information on breast cancer (Ayoub et al. 2021) and related topics (Hillyer et al. 2019). However, coverage of genetic risk factors, such as BRCA1/2 mutations, has been understudied. Therefore, the purpose of this study was to describe content related to BRCA1/2 mutations on YouTube.
Methods
The 100 most viewed videos in English on YouTube were searched on May 27, 2021, using the keyword “BRCA” and were stored on file. This study solely analyzed videos in English. Eight of the most-viewed videos were not in English and were thus excluded and replaced with the next 8 English videos.
For each video, metadata including the URL, length of video (in minutes and seconds), date of upload, number of views, source of video upload (consumer, healthcare professional, television- or internet-based news, entertainment television) were recorded. We assessed mentions related to general information about BRCA mutations, cancer risk associated with having a BRCA mutation, BRCA mutation testing, and cancer risk reduction strategies for those who test positive for BRCA mutations utilizing a BRCA fact sheet (Mayo Foundation for Medical Education and Research 2021). We also examined differences in video content by the source of the video.
Frequency distributions were created for the categorical variables in the study and, for continuous variables (view counts and length of the video in minutes), the means, standard deviations, and ranges were calculated. To examine the differences between characteristics and content of videos about BRCA mutations created by healthcare professionals and those generated by consumers and the media, we conducted univariable analyses using Chi-square, Fisher exact tests, and Analysis of Variance (ANOVA). P-values < 0.05 were considered statistically significant. To assess inter-rater reliability, one author (BY) reviewed and coded all 100 videos and a second author (PEL) subsequently coded a random 10% subset of these videos. Cohen’s κ was found to be 0.97, thus revealing excellent interrater reliability. All analyses in this study were performed using SPSS version 27 (IBM SPSS, Armonk, NY, USA). This protocol was not reviewed by an institutional review board since it did not involve human subjects, consistent with the policies at both William Paterson University and Columbia University.
Results
The 100 videos evaluated in this study were viewed 5.5 million times (Table 1). The mean number of views was 55,561.8 [SD 229,517.0] with a mean duration of 7.5 [SD 10.6] minutes. The majority of videos (71.0%) were produced by health professionals and most commonly uploaded (50.0%) between 2013 and 2015. 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. Forty percent of videos mentioned that men can also carry the BRCA mutations. While 92.0% of videos discussed the relationship between BRCA mutations and the risk of developing breast cancer, 72% mentioned the BRCA mutation association with ovarian cancer and 30% discussed the increased risk for other cancers, such as colorectal, pancreas, and prostate cancer, also linked to BRCA mutations. Even fewer videos (24.0%) mentioned the higher prevalence of BRCA mutations among certain racial and ethnic groups like the Ashkenazi Jews. A great number of videos (85.0%) talked about 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 the interpretation of the test results. Little information was presented on prophylactic surgery (59.0% mastectomy and 38.0% oophorectomy) or chemoprevention (22.0%); fewer videos provided information about negative test results (13.0%) or result of uncertain significance (9.0%).
Table 1.
Characteristics and content of the 100 most viewed YouTube videos about BRCA mutations
| Total | Professional (n = 71) |
Consumer/media (n = 29) |
P value | |
|---|---|---|---|---|
| Video characteristics | ||||
| Views | 0.04 | |||
| Cumulative | 5,556,176 | 1,851,825 | 3,704,351 | |
| Mean [SD] | 55,561.8 [229,517.0] | 26,082.0 [53,249.4] | 127,736.2 [414,206.4] | |
| Range | 1571–1,693,224 | 1571–276,406 | 1833–1,693,224 | |
| Length | 0.88 | |||
| Mean [SD] (minutes) | 7.5 [10.6] | 7.6 [10.7] | 7.3 [10.6] | |
| Range | 0.3–64.4 | 0.3–64.4 | 1.2–52.5 | |
| Year of upload | 0.03 | |||
| 2008–2012 | 12 (12.0) | 6 (8.5) | 6 (20.7) | |
| 2013–2015 | 50 (50.0) | 42 (59.2) | 8 (27.6) | |
| 2016–2017 | 13 (13.0) | 8 (11.3) | 5 (17.2) | |
| 2018–2021 | 25 (25.0) | 15 (21.1) | 10 (34.5) | |
| BRCA mutation general information | 0.15 | |||
| Mentions BRCA mutation types | ||||
| Both BRCA1 and BRCA2 | 63 (63.0) | 47 (66.2) | 16 (55.2) | |
| BRCA1 only | 11 (11.0) | 6 (8.5) | 5 (17.2) | |
| BRCA2 only | 5 (5.0) | 2 (2.8) | 3 (10.3) | |
| BRCA (no differentiation) | 21 (21.0) | 16 (22.5) | 5 (17.2) | |
| Mentions the difference between BRCA1 and BRCA2 | 0.22 | |||
| Yes | 15 (15.0) | 13 (18.3) | 2 (6.9) | |
| No | 85 (85.0) | 58 (81.7) | 27 (93.1) | |
| Mentions BRCA gene variants | 0.62 | |||
| Yes | 76 (76.0) | 53 (74.6) | 23 (79.3) | |
| No | 24 (24.0) | 18 (25.4) | 6 (20.7) | |
| Mentions BRCA gene mutations in men | 0.28 | |||
| Yes | 40 (40.0) | 26 (36.6) | 14 (48.3) | |
| No | 60 (60.0) | 45 (63.4) | 15 (51.7) | |
| Risk associated with BRCA gene mutations | ||||
| Mentions the implications of inheriting a mutation in these genes | 1.00 | |||
| Yes | 93 (93.0) | 66 (93.0) | 27 (93.1) | |
| No | 7 (7.0) | 5 (7.0) | 2 (6.9) | |
| Mentions the link between a mutated BRCA gene and higher risk of breast cancer | 0.43 | |||
| Yes | 92 (92.0) | 64 (90.1) | 28 (96.6) | |
| No | 8 (8.0) | 7 (9.9) | 1 (3.4) | |
| Mentions the link between a mutated BRCA gene and higher risk of ovarian cancer | 0.67 | |||
| Yes | 72 (72.0) | 52 (73.2) | 20 (69.0) | |
| No | 28 (28.0) | 19 (26.8) | 9 (31.0) | |
| Mentions increased risk for cancers other than breast and ovarian cancer associated with BRCA gene mutations | 0.74 | |||
| Yes | 30 (30.0) | 22 (31.0) | 8 (27.6) | |
| No | 70 (70.0) | 49 (69.0) | 21 (72.4) | |
| Mentions higher prevalence of BRCA gene mutations in certain racial/ethnic groups | 0.04 | |||
| Yes | 24 (24.0) | 13 (18.3) | 11 (37.9) | |
| No | 76 (76.0) | 58 (81.7) | 18 (62.1) | |
| BRCA gene mutation testing | ||||
| Mentions genetic testing | 0.22 | |||
| Yes | 85 (85.0) | 58 (81.7) | 27 (93.1) | |
| No | 15 (15.0) | 13 (18.3) | 2 (6.9) | |
| Mentions benefits of genetic testing for BRCA mutation | 0.31 | |||
| Yes | 76 (76.0) | 52 (73.2) | 24 (82.8) | |
| No | 24 (24.0) | 19 (26.8) | 5 (17.2) | |
| Mentions the harms of BRCA1 or BRCA2 gene mutation testing | 1.00 | |||
| Yes | 16 (16.0) | 11 (15.5) | 5 (17.2) | |
| No | 84 (84.0) | 60 (84.5) | 24 (82.8) | |
| Mentions who should consider BRCA testing | 0.81 | |||
| Yes | 57 (57.0) | 41 (57.7) | 16 (55.2) | |
| No | 43 (43.0) | 30 (42.3) | 13 (44.8) | |
| Mentions seeking genetic counseling | 0.94 | |||
| Yes | 42 (42.0) | 30 (42.3) | 12 (41.4) | |
| No | 58 (58.0) | 41 (57.7) | 17 (58.6) | |
| BRCA risk reduction | ||||
| Mentions means to reduce risk among BRCA mutation carriers | 0.04 | |||
| Yes | 72 (72.0) | 47 (66.2) | 25 (86.2) | |
| No | 28 (28.0) | 24 (33.8) | 4 (13.8) | |
| Mentions prophylactic mastectomy to reduce risk among carriers | 0.03 | |||
| Yes | 59 (59.0) | 37 (52.1) | 22 (75.9) | |
| No | 41 (41.0) | 34 (47.9) | 7 (24.1) | |
| Mentions prophylactic oophorectomy to reduce risk among carriers | 0.07 | |||
| Yes | 38 (38.0) | 23 (32.4) | 15 (51.7) | |
| No | 62 (62.0) | 48 (67.6) | 14 (48.3) | |
| Mentions chemoprevention | 0.07 | |||
| Yes | 22 (22.0) | 19 (26.8) | 3 (10.3) | |
| No | 78 (78.0) | 52 (73.2) | 26 (89.7) | |
| Testing results | ||||
| Mentions recommendations if one tests positive for a BRCA mutation | 0.10 | |||
| Yes | 75 (75.0) | 50 (70.4) | 25 (86.2) | |
| No | 25 (25.0) | 21 (29.6) | 4 (13.8) | |
| Mentions implications of a negative test | 0.049 | |||
| Yes | 13 (13.0) | 6 (8.5) | 7 (24.1) | |
| No | 87 (87.0) | 65 (91.5) | 22 (75.9) | |
| Mentions implications of a test with uncertain findings test | 0.44 | |||
| Yes | 9 (9.0) | 5 (7.0) | 4 (13.8) | |
| No | 91 (91.0) | 66 (93.0) | 25 (86.2) | |
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). Despite the vast difference in the number of views, content between the two sources was closely aligned with few exceptions. Surprisingly, consumer/media videos more often mentioned the higher prevalence of BRCA gene mutations in certain racial and ethnic groups (37.9% vs. 18.3%, p = 0.04), ways to reduce cancer risk among BRCA mutation carriers (86.2% vs. 66.2%, p = 0.04) including prophylactic mastectomy (75.9% vs. 52.1%, p = 0.03), and the implications of a negative BRCA mutation test (24.1% vs. 8.5%, p = 0.049) than videos generated by healthcare professionals.
Discussion
The findings from this study indicate that YouTube serves as a platform for information about BRCA. Overall, the videos cover the majority of topics that are most important about BRCA mutations but there are gaps that should be addressed. These gaps include recommendations for BRCA mutation positive patients to speak with a doctor/genetic counselor to receive more extensive/medical grade testing prior to acting on test results as well with their family members for support and to discuss their potential familial risk.
In addition, these videos highlight the need for more content regarding the higher prevalence of BRCA mutations among certain racial and ethnic groups, medical options for patients who test positive for BRCA mutations, and the risk of BRCA mutations among men. Additionally, videos need to include more content on potential harms of genetic testing, such as feelings of sadness or depression, fear of insurance discrimination, and difficult decisions regarding prophylactic preventive measures that have permanent consequences, as well as the implications of a negative or uncertain test result.
Further, videos uploaded by professionals are not quite as comprehensive and informative as consumer and media videos. Thus, it is clear that videos from medical professionals need to include consistent information on the recommendations for individuals who test positive for a BRCA mutation (Farmer et al. 2020; Mayo Foundation for Medical Education and Research 2021). Such content should include education about BRCA mutations, testing, implications of test results and ways to reduce risk, and recommendations for increased surveillance and enhanced screening for individuals positive for BRCA mutations (Kuchenbaecker et al. 2017; Rebbeck et al. 2018; Nelson et al. 2019; Shraga et al. 2021) Videos should also contain information on potential difficulties experienced when deciding to talk with family members about test results (CDC 2020). The limitations of this study include the cross-sectional design, which only allows for data collection at a single point in time, the comparatively small sample size, and the fluctuating nature of content posted to the internet. However, this area of research is under-explored and thus can serve as the basis for future studies. Further study is needed to determine what draws consumers to particular videos and to determine what aspects of popular videos can be applied to other modes of communication to make professional information more engaging and accessible.
Declarations
Ethics approval and consent to participate
As per the protocol at William Paterson University, the Institutional Review Board does not review studies that do not involve human subjects. This article does not contain any studies with human or animal subjects performed by the any of the authors.
Consent for publication
Not applicable.
Conflict of interest
The authors declare no competing interests.
Footnotes
Publisher's note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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