Social Media for Carriers of Hereditary Cancer Syndromes

by Stefania Vicari, PhD and Hannah Ditchfield, PhD

People with BRCA mutations and Lynch syndrome experience uncertainty for themselves and their families regarding the management of cancer risk. They often turn to social media to seek, learn and share content. The Previvorship in the Platform Society research project explored how everyday social media use may influence the way people understand and experience hereditary cancer risk.

What we did

The project ran from February 2022 to November 2025, led by Professor Stefania Vicari in collaboration with Dr. Hannah Ditchfield and funded by The Leverhulme Trust. To identify content about BRCA and Lynch syndrome that is easily available on social media, we analyzed thousands of public posts mentioning “BRCA,” “Lynch syndrome” or related hashtags on Facebook, X (then Twitter), TikTok and Instagram. To understand how carriers experience this content, we interviewed 80 people who post or read about BRCA or Lynch syndrome on these platforms. Finally, we held a workshop with carriers, academics and advocates to discuss what good social media looks like.

What we found

Our analysis of public social media posts (which excludes content on private Facebook groups) told us that:

1. The type of information and the topics discussed differ highly from platform to platform. We found that Twitter was primarily used for scientific matters, especially in the context of professional and academic networking; Instagram focused on women’s experiences, especially with breast cancer, with much inspirational content and campaigning; TikTok provided more “unpolished” and often very personal stories.
2. There are inequalities in the way different communities of mutation carriers are represented. On Twitter/X, Instagram and Facebook, traditionally minoritized gender and ethnic groups (e.g., trans, non-binary, black and brown individuals) are underrepresented. The same is true for people who made post-surgery choices that have historically been seen as unconventional (e.g., postmastectomy flat closures). We also found that popular TikToks from creators who show postmastectomy flat closures are sometimes met with transphobic and misogynistic commentary.

Our interviews with mutation carriers who share content on social media told us that:

1. They often master platform features in expert ways: they learn what makes their content more visible and maintain boundaries between their personal and public selves.
2. They feel that posting can be therapeutic and helps build community.
3. They experience faulty moderation by platforms (e.g., removing mastectomy content as “sexual”), abuse (e.g., misogynistic or transphobic commentary in response to mastectomy flat closure) and a lack of control over what content is recommended by algorithms, all of which can cause emotional strain.
4. Their content on visual platforms, especially TikTok, can be highly emotive, like “transformations” to communicate hereditary cancer journeys through diagnoses, preventive interventions, treatment and survival.
5. They see themselves as information providers and guardians. They often work hard to moderate and correct what they feel is misleading or wrong content (particularly on Facebook groups) and are motivated to raise awareness.
6. They take on emotional and activist work, for instance by giving advice and recommendations, presenting their experiences in the most “authentic” way and responding to criticisms and misconceptions.

Why this matters

These findings matter because visible content and how people with inherited mutations present themselves within this content can influence people’s experiences, expectations and practices related to important decisions about cancer prevention or treatment, family planning, conversations with children and interactions with healthcare professionals.

What we recommend

Our workshop with mutation carriers, academics and advocates deliberated that while “good” social media afford connection, knowledge sharing and advocacy, “bad” social media bring poor or misleading information, unhelpful representation and emotional harm.

Based on our overall findings, we make practical recommendations for carriers, healthcare professionals and social media platforms.

For creators of hereditary cancer content:

• Reflect on, and protect, personal boundaries.
• Know your platform, its norms and its population.
• Fact-check and emphasize the individualized nature of personal stories.
• Use unconventional visuals or pair hereditary cancer content with other topics to enhance your visibility and reach.

For people with mutations who access hereditary cancer content on social media:

• Use social media as one tool in your (online and offline) toolbox. Arm yourself with knowledge from reputable sources (health professionals, registered charities and nonprofit organizations, medical professionals) to help engage critically with the information you find.
• Check if your minor children are also accessing hereditary cancer information on their platforms, as they are likely to find different content than what you are used to. If they are, review the sites to ensure that your children are receiving accurate, age-appropriate information.  
• Utilize platform features to protect your boundaries (e.g., to avoid being constantly recommended hereditary cancer content).
• Engage with content that best serves your personal needs.

For healthcare professionals:

• Acknowledge social media as part of many mutation carriers’ hereditary cancer journey.
• Recommend reputable social media pages as a good place to start.

For social media platforms:

• Develop more context-specific moderation guidelines.
• Make the appeals process (for content removal and account suspension) transparent and accessible.
• Make moderation systems learn from their mistakes.

What’s next?

We have started a new research project, New Genetics, Same Old Surgeries: Cancer Risk, Personalized Medicine and Women’s Health (NeGen-SOS), to explore and improve the communication and experiences of prevention for individuals with a genetic risk of gynecological cancer.

Public debate and media coverage of cancer genetic risk usually focuses on BRCA narratives of breast cancer and preventive mastectomies. Yet, most female carriers also undergo “gynecological risk-reducing surgeries”— the removal of healthy ovaries, fallopian tubes and/or the womb. Despite their huge implications for women’s lives, we know very little about how these surgeries are communicated about across social media and within clinical practice.

NeGen-SOS is therefore researching how gynecological risk-reducing surgeries are covered in public discourse, performed in the clinic and experienced by carriers of BRCA and Lynch syndrome genetic mutations. Professor Stefania Vicari leads the research, in collaboration with Dr. Hannah Ditchfield, Professor Mike Thelwall, Dr. Malgorzata Iwaniec-Thompson and Dr. Kate Weiner, funded by the UK Economic and Social Research Council and will run until April 2029.

Where to find out more

Please see our end of project report for a more detailed description of Previvorship in the Platform Society’s methods, findings and recommendations. For more information on NeGen-SOS, please visit the project’s website. Our articles are open access in The Conversation, New Media & Society, Sociology of Health & Illness and Social Media & Society.

You can listen to us on The Positive Gene Podcastwith Sara Kavanaugh.

Stefania Vicari, PhD, is a Professor in Digital Media and Society at Loughborough University, UK. 

Hannah Ditchfield, PhD, is a Research Associate in Digital Media and Communication at Loughborough University UK.