Online Provision of BRCA1 and BRCA2 Health Information: A Search Engine Driven Systematic Web-Based Analysis

Simple Summary BRCA genetic testing is available for UK Jewish individuals through the National Health Service or private providers. This study evaluated how well UK organisations (UKO), UK Jewish community organisations (JCO), and genetic testing providers (GTP) provide information about BRCA online. Google was used to find relevant websites and assessed the first 100 links. We reviewed the sites for how accessible, comprehensive, detailed, accurate, and high-quality the information was, giving each site a score out of 5. From 6856 search results, we found 45 UKOs, 16 JCOs, and 18 GTPs that provided BRCA information. While most sites (84%) were easy to access, the information was often incomplete. Only 35% of sites covered more than half of the important BRCA topics. Most sites mentioned breast and ovarian cancer (82%), but fewer mentioned other BRCA-related cancers. Overall, the quality of information was low-to-moderate. This highlights a need for better online BRCA information. Abstract BRCA genetic testing is available for UK Jewish individuals but the provision of information online for BRCA is unknown. We aimed to evaluate online provision of BRCA information by UK organisations (UKO), UK Jewish community organisations (JCO), and genetic testing providers (GTP). Google searches for organisations offering BRCA information were performed using relevant sets of keywords. The first 100 website links were categorised into UKOs/JCOs/GTPs; additional JCOs were supplemented through community experts. Websites were reviewed using customised questionnaires for BRCA information. Information provision was assessed for five domains: accessibility, scope, depth, accuracy, and quality. These domains were combined to provide a composite score (maximum score = 5). Results were screened (n = 6856) and 45 UKOs, 16 JCOs, and 18 GTPs provided BRCA information. Accessibility was high (84%,66/79). Scope was lacking with 35% (28/79) addressing >50% items. Most (82%, 65/79) described BRCA-associated cancers: breast and/or ovarian cancer was mentioned by 78%(62/79), but only 34% (27/79) mentioned ≥1 pancreatic, prostate, melanoma. Few websites provided carrier frequencies in the general (24%,19/79) and Jewish populations (20%,16/79). Only 15% (12/79) had quality information with some/minimal shortcomings. Overall information provision was low-to-moderate: median scores UKO = 2.1 (IQR = 1), JCO = 1.6 (IQR = 0.9), and GTP = 2.3 (IQR = 1) (maximum-score = 5). There is a scarcity of high-quality BRCA information online. These findings have implications for UK Jewish BRCA programmes and those considering BRCA testing.

Public awareness, availability, and accessibility of BRCA genetic testing has increased over time.Traditionally, genetic testing provision has been restricted to individuals meeting strict clinical/family history criteria with a pre-test BRCA probability of ≥10% [12].Genetic testing is available free of cost through the UK National Health Service (NHS) or via private testing providers at a charge.Implementation of mainstream genetic testing for cancer diagnosis and associated cascade testing is identifying more unaffected BRCA carriers.A London pilot UK NHS programme of BRCA testing for all women diagnosed with BC commenced in July 2023.Long-term trials have demonstrated feasibility, acceptability, high satisfaction, reduced anxiety, no detrimental impact on quality of life, and cost-effectiveness of population-based BRCA testing in the Jewish population [13][14][15][16].Resultantly, NHS England Cancer Programme introduced clinical implementation of population-based BRCA1 and BRCA2 testing for all UK Jewish adults in January 2024 [17][18][19].Consequently, there is an even stronger demand and need for BRCA information for individuals considering testing and to support identified PV carriers [20].Although clinicians/health professionals (including clinical geneticists, genetic counsellors, medical/surgical oncologists, clinical nurses, and others) provide pre-and post-test counselling, many individuals require and seek further information and support from online resources.According to the UK Office of National Statistics, 60% of UK adults searched for health-related information online in 2020 [21].This highlights the need for high-quality BRCA information online as the demand for testing increases and information is sought online.
There has been very limited research into the availability and quality of online information on BRCA.One study, not specific to BRCA information, of UK direct-to-consumer genetic testing services found very limited compliance with good practice principles developed by the UK Human Genetics Commission [22].There has been no research into the quality and provision of BRCA specific information provided by community organisations, charities, cancer organisations, or testing providers.
Given the interest in, need for, and impact of online information on user behaviour and health-related decisions, it is crucial for healthcare organisations, advocacy/patient support/charity groups, and other stakeholders to offer accurate and easily accessible infor-mation about BRCA1/BRCA2.Several websites provide online information, support, and other services relating to BRCA; these include cancer organisations and community-based organisations with interests in health and community support.Organisations working with the UK Jewish community may also provide information about BRCA given the higher carrier frequency of BRCA PVs in the Jewish population (1:40 compared to ~1:200 for the general UK population).Furthermore, several companies offer private genetic testing, either via clinician or direct-to-consumer, with associated online resources and testing information.These may be promoted with search engine advertisements or optimisations and are likely to be read by interested individuals.
This study aimed to evaluate the online provision and quality of BRCA1/BRCA2 information, including that related to genetic testing and its implications, by UK organisations (UKO), UK Jewish community organisations (JCO), and (private) genetic testing providers (GTP).

Organisation Groups
UKOs were defined as UK-based organisations offering information regarding BRCAassociated cancers (breast, ovarian, pancreatic, prostate cancer, or melanoma), BRCA testing, or BRCA support.JCOs were defined as organisations working primarily in the UK Jewish community in areas of health, welfare, community education/awareness raising, signposting, or community leadership.GTPs were defined as private companies offering BRCA1 and BRCA2 testing to UK residents.

Search Strategy
One author (A.K.) performed online searches (www.google.co.uk, accessed on 27 February 2022) between February to May 2022, using Mozilla Firefox version-97.0.1 (64-bit), from a UK desktop PC, with pre-defined sets of keywords relating to BRCA information to identify websites (Supplementary File: A).To avoid bias from personalised search algorithms, as described previously [23], we used a non-university/NHS internet connection, a private browser window, and changed IP-address and deleted browser data/history before each search.
Forty searches were performed to identify UKOs and JCOs websites with BRCA information.For every search with different keywords, details, and website links of the first 100 search results (including advertisements) were recorded.GTP websites were identified through 40 keyword searches and supplemented by the UKO/JCO search results.Website links were recorded for the first 100 (UKO and JCO) and 50 GTP search results, as results thereafter only included duplicates.Additional JCO websites were identified through lists from the Jewish Leadership Council, Board of Directors, Jewish Charity Guide, and three Jewish community experts.Duplicates were removed.

Website Selection
We included organisations based on their mission/aims/remit, which on assessment should provide/support information relevant to BRCA.This included UKOs focused on BRCA-associated cancers, BRCA genetic testing, BRCA support, or cancer in general.We included JCOs with stated interests of Jewish community health, providing health-related emotional or wellbeing support and/or health education or focused on women's health or cancer.
We included UKO or JCO websites from organisations with a national reach that provided BRCA information in one of the following formats: raising awareness or support for BRCA-associated cancers or BRCA testing, information provision on a dedicated webpage, mentioning BRCA on a webpage, or in published media (e.g., an article/blog/leaflet/news item/podcast/post), outreach talk/workshop, online forum, signposting, support group, or telephone helpline.All GTPs who stated they provided BRCA1 and BRCA2 genetic testing to UK individuals were included.
All websites were screened for eligibility by two authors (A.K., K.S.).UKO/GTP websites excluded were as follows: not UK-based/unavailable to UK residents; inaccessible (faulty link); NHS hospital websites with information relevant only to their own service(s); scientific publications; health organisations unrelated to genetics/cancer; organisations not related to BRCA-associated cancers; websites without information targeted towards laypeople; or news media websites.JCO websites excluded were as followed: not UK-based; solely fundraising/grant giving; interfaith/peace organisations or primarily religion-based; focusing on medical research/childhood cancers/politics/poverty/helping disadvantaged groups/servicemen/volunteering; non-BRCA patient groups; focusing on the holocaust; focusing on art/history/culture/architectural preservation; and schools (primary/nursery/secondary).Websites were reviewed as below.
We developed customised questionnaires (Supplementary File: B. Questionnaire: A1, A2, A3) to assess overall website BRCA information provision for JCO, UKO, and GTP organisations, respectively.For UKOs/JCOs these comprised seven questions (26 items) about organisational remit, relevant general BRCA information, BRCA genetic testing and cancer risk management options, further signposting, awareness raising/educational activities, carrier/family support services, genetic testing provision/access.The GTP questionnaire comprised eight questions (28 items) about organisational remit, genetic testing services offered, test information, testing service access (eligibility/referral/counselling/booking), service components and process, service costs, BRCA relevant clinical information, and other hereditary cancer information.
Websites were scored across five domains for BRCA information provided (Table 1).These domains were selected to broadly encompass what we felt someone looking for BRCA information would need to be able to access information, and how that information fitted with the expectation of information that is comprehensive, fully explained, and correct.Quality was added as this is an important domain and has been previously used in assessment of written information on websites [24][25][26].These domains included (1) accessibility (2 items: search bar presence on website, number of (≤3) clicks needed to access BRCA information, each scored 0/1); (2) scope (5 questions [Q2-Q6], 23 items for UKO/JCO; 7 questions [Q2-Q8], 26 items for GTP); (3) depth (6 items, each scored 0 [brief/no information] or 1 [in-depth]); (4) accuracy (6 items, each scored 0 [inaccurate] or 1 [accurate]); and (5) quality of written information (assessed by the validated 16-item DISCERN-questionnaire [27,28], adapted for BRCA1/BRCA2 information provision (Supplementary File: C).Total number o f items , with a maximum score = 1 for each domain.For quality (domain 5), overall DISCERN score ranges from 1 to 5 (1 = serious shortcomings, 5 = minimal/no shortcomings) with the quality of information provided.
To facilitate overall comparisons between websites, domain scores were converted into summary scores.The DISCERN score was divided by five and then scores of all five domains were summed-up/aggregated and divided by five.
Although 63% (50/79) lacked information, almost all (97%, 28/29) websites with information provided accurate information on management options for BRCA1/BRCA2 PV carriers.One JCO mentioned OC screening as a management option, but this was not available/recommended under UK NHS care at that time [33][34][35].

Combined Scores across All Five Domains
Median scores for the five domains (accuracy, accessibility, scope, depth, and quality) across the three organisation types showed an overall low-to-moderate level of information provision (median = 1.9/5,IQR = 1.1;Table 5).Four websites (UKOs = 2; JCOs = 2) had overall scores < 1.Five (11%) UKOs had an overall score > 3.5/5.Two each had a dedicated BRCA webpage or genetic testing webpages with BRCA information and one provided an extensive patient information leaflet.
Two (13%) JCOs had an overall score > 4/5 and were the two highest-scoring JCOs across all five domains, providing high-quality BRCA information.These had a dedicated webpage with BRCA1/BRCA2 information, ≥2 formats of information, and one also provided a support group.

Findings
We found that overall provision of BRCA1/BRCA2 information was lacking/limited across websites that had a health-or community-facing remit and those that provided BRCA information.
Within the organisation types that provided information, there was a noticeable difference in the quality and quantity/breadth of information provided, varying between one brief mention of BRCA1/BRCA2 and others that provide dedicated, easily accessible webpages with extensive information.Amongst GTPs, there was wide variation in testing information provided, including that relating to the nature of testing, costs, eligibility criteria, and the availability of and requirements for pre-and post-test counselling, with clear information regarding these issues lacking across multiple websites.
The overall accessibility of websites was high, but the information scope, depth, accuracy, and quality were poor for most, and only around half signposted to other information sources.
Very few websites provided complete information regarding all aspects of BRCA information (domain 2 [scope] and domain 3 [depth]).Inaccuracy of information was due to the information being out of date, but also not providing complete information regarding cancer risks and/or management.Only four (5%) provided accurate risk estimates for all BRCA-associated cancers by gene/sex and 53% lacked information about BRCA-associated cancer risks.Cancer risks provided should be up to date and be in line with risks provided in the UK Cancer Genetics Group guidelines [36].Table 6 shows the risks that should be provided in public facing materials.Information on management options was lacking on 57% websites and only 18% covered both screening and medical/surgical prevention.Only 29% (22/79) of websites provided information about BRCA1/BRCA2-associated male breast, prostate, pancreatic cancers, and melanoma.Overall, 58% of websites had serious shortcomings and 27% had moderate shortcomings in the quality of information (DISCERN assessed) provided.Combined scores from all five domains (accessibility, scope, depth, accuracy, and quality) suggested a low-to-moderate level of information provision, with large variation across websites.Only 11% of websites had a high level of information, suggesting these websites would be beneficial for individuals to access at when looking for BRCA information.

Strengths and Weaknesses
To our knowledge, this is the first study evaluating websites on the provision of BRCA1/BRCA2 information, for individuals searching for health information online via a search engine.This is the first to evaluate organisational websites relating specifically to the Jewish community, as well as the general population.This is relevant, given the implementation of Jewish population-testing programmes in the UK and Israel.Validated tools to evaluate all relevant aspects of online information were unavailable, and so we developed a scoring system to facilitate a comprehensive and systematic review of website content across five domains.We considered the accessibility of information as equally important as accuracy, scope, depth, and quality for an interested individual, as this influences how likely information is to be viewed.We used the previously described 'three click rule' [37], which states that website information should be accessible within three clicks, based on the belief that users will stop searching if it takes them longer than this.However, some studies suggest that organisation, navigation, and structure of websites should also be taken into consideration [38,39].We considered the number of clicks as simple and objective tool to assess this.We used a modified version of the validated DISCERN tool [27,28] to assess information quality.We attempted to minimise interpretation bias with DISCERN scoring by a senior reviewer (K.S.), training all reviewers, and review of any discordance/issues by two reviewers (T.A.G., K.S.).We used the most common UK/worldwide search engine [40], and reviewed a large number of results, despite evidence that 91.5% of Google users stay on the first results page and only 4.8% click the second page [41] The number of relevant websites was too small to enable further statistical testing to quantitatively compare between websites.Although, we took appropriate steps to reduce biases in searches and website data extraction, we cannot guarantee results were free from bias, as search engine algorithms are not published.We restricted this analysis to websites relevant for a UK population.Further research will need to address information provision across a broader international population.

Interpretation
The finding that information provision varied across and within the three organisational groups is also consistent with findings in other studies on website information regarding cervical cancer, skin cancer, and BC screening [23,42,43].If individuals have access to different information regarding a health-related topic, this can impact their decision-making process and choices they make.If information on a website is incomplete or poorly understood, it could cause concern and/or undermine this process [44].
Online information increases awareness and improves informed decision-making about genetic testing and/or risk management.Online provision of high-quality, trustworthy, relevant, and accessible information on BRCA is important given the large numbers of people who search for genetic testing information online.Around 44% of individuals having genetic testing for cancer susceptibility genes identified online searches as the primary source to look for additional information, outside of clinical pre-and post-test counselling, although it was difficult to identify trustworthy sources [45].A one-size-fits-all approach to genetic testing may not be suitable, since individuals may need different amounts of information based on several different factors [46][47][48].Hence, information provision must be tailored to individual circumstances, including desire for details.
Several studies have explored the effect of education and decision-making including uptake of genetic testing.Though few had equivocal results [44,49,50], multiple studies demonstrate information/education improves knowledge and satisfaction and reduces uncertainty and decisional conflict [14,[51][52][53].Some of these results may be impacted by the effect of in-person counselling, higher motivation, and/or pre-existing intention to test.However, this may not be representative or generalisable to those searching online, who may have a lower baseline level of information or intention to test.A US general population study found that repeated viewing of an online decision aid was associated with increased ease of decision, and increased likelihood to undergo testing [54].Another US study of women undergoing BRCA genetic testing found 48% of participants decided to undergo genetic testing or not irrespective of clinician advice or attitude [46].It has also been shown that higher BRCA-related knowledge increases the likelihood of accepting genetic testing [46,47].Ensuring individuals have easy access to reliable BRCA information through not only clinicians but also websites can improve knowledge and decision-making regarding genetic testing.
The increasing awareness, along with expanding access and applicability of genomics and BRCA genetic testing to healthcare, is leading to many more individuals seeking trustworthy sources of information about testing tomake properly informed decisions.Hence, appropriate online BRCA1/BRCA2 information provision is increasingly important.This is exemplified by the new NHS England Jewish population BRCA genetic testing programme [17], expanding testing for all women with BC diagnosis in a new London based NHS pilot [55], and falling thresholds for clinical genetic testing [56].
A number of organisations, particularly JCOs, do not provide comprehensive information about BRCA1/BRCA2.However, a high-quality website should provide clear signposting to other websites or sources of information.It is important that UKOs, especially those for cancer in general and with a specific remit for BRCA-associated cancers, provide a high standard of information.GTPs providing BRCA1/BRCA2 genetic testing should provide comprehensive information regarding testing, especially those that offer direct-to-consumer tests.Our data highlight huge gaps in information provision that need addressing.
Although we evaluated online website information provision, this is not the only source of information people interested in obtaining BRCA information could use.Several studies show the use of social media for health-related information, including communication on BRCA1 and BRCA2 on several platforms, such as Facebook, Instagram, and Twitter [45,49,57].Other examples of sources are telephone helplines and physical leaflets.We tried to identify these sources by capturing if this was provided by the organisations we investigated; however, an analysis of social media content was beyond the scope of this study and is a point for future research.

Conclusions
This is the first study to assess BRCA information provision available on websites of UK organisations (including Jewish-specific) and genetic testing providers.We find that overall provision of high-quality information is low, with large variation in quantity and quality across websites providing BRCA information.There is a need for improved accessible and

Table 1 .
Website scoring.Per domain a score between 0-1 can be awarded, up to a maximum score of 5 for all domains combined.
Sum o f the points f or the amount o f clicks and availibility o f a search bar 2
• 0-Brief or no information: 1-2 options mentioned • 1-In depth: all management options (risk-reducing surgery, medication, screening) and/or other options such as lifestyle management Difference of carrier frequency between AJ and non-AJ populations • 0-Brief or no information: mentions difference • 1-In depth: provides estimates/numbers Explanation of BRCA inheritance • 0-Brief or no information: Only mentions inheritance • 1-In depth: Mentions 50:50/1 in 2 chance and/or dominant inheritance Increased cancer risks for BRCA carriers • 0-Brief or no information: Only brief mention of increased risk of a BRCA-associated cancer or includes general stats for increased risk of a BRCA-associated cancer • 1-In depth: Includes statistics or details that differentiate between BRCA1 & BRCA2 risks or includes statistics or details for different BRCA1 & BRCA2 risks for >2 relevant cancers Signposting to further BRCA information, service, and support resources • 0-Brief or no information: to less than or equal to 2 resources • 1-In depth: to multiple information/support resources Score calculation Score = Number o f questions with in depth answers on selected depth questions 6 Accuracy * Included questions: BRCA-associated cancers • 0-Inaccurate: any mention of other cancers than the correct ones.• 1-Accurate: needs to include breast, ovarian, melanoma, pancreatic or prostate.BRCA carrier risk management options • 0-Inaccurate: wrong management options i.e., for example, screening for ovarian cancer • 1-Accurate: appropriate chemoprevention, risk-reducing surgery or screening in line with clinical guidelines * NA was given to websites without information to assess accuracy.

Table 2 .
BRCA information provided by JCOs and UKOs.

Table 5 .
Combined scores across all five analysis domains.

Table 6 .
Cancer risks associated with BRCA1 and BRCA2 pathogenic variants to age 80.