Here is a collection of resources and publications taken from our current, and previous, research on hereditary cancer communication.
Social media for carriers of hereditary cancer syndromes
The report presents the findings from the Previvorship in the Platform Society project. It draws on social media analysis, interviews with carriers of hereditary cancer syndromes (BRCA and Lynch syndrome-related), and a stakeholder workshop.
In the report, we highlight both the opportunities and challenges social media present for carriers of hereditary cancer syndromes. We pair our findings with practical recommendations for creators, social media users, healthcare professionals, and platforms. (We do not provide any medical suggestions!)
The Positive Gene Podcast: Telling Our Stories Online
In this episode of The Positive Gene Podcast, host Sara Kavanaugh takes the mic on the road in London with Dr. Stefania Vicari and Dr. Hannah Ditchfield. Together, they explore how research into social media is reshaping what we know about hereditary cancer, advocacy, and the very word previvor.
Listen to podcast episode on The Positive Gene Podcast
Identity Roles and Sociality on TikTok: Performance in Hereditary Cancer Content (#BRCA and #Lynchsyndrome)
This article was published open access in Social Media + Society on 31 May 2025 and is based on the Previvorship in the Platform Society research.
What kinds of identities are performed in hereditary cancer content on TikTok? We studied the “most popular” Lynch Syndrome and BRCA posts on TikTok and found that creators enact certain roles: the celebrator focuses on strength, resilience, health, and beauty, with users constructing performances of confident, strong, and reflective selves. The defender actively works to respond to criticism, stigma, and misconception, defending themselves, their decisions, and their wider communities, often showcasing a politicized self. The mentor constructs a supportive, empathetic self that gives recommendations, instructions, and encouragement to their audience. Why do these roles matter? Firstly, these roles appear within the most visible, and arguably most popular, content connected to #BRCA and #lynchsyndrome, therefore revealing something about the type of narratives users are exposed to when seeking information and support in relation to a hereditary cancer diagnosis on TikTok. Secondly, compared to other social media, TikTok content shows more non-normative representations of the condition e.g. “flattie” content. These alternative representations are celebrated (the celebrator) and used as a springboard for support (the mentor), but they also have to be defended (the defender). Does this raise questions on the extent to which TikTok is a supportive, safe space for hereditary cancer creators?
Contemporary visualities of ill health: On the social (media) construction of disease regimes
This article was published open access in Sociology of Health and Illness on 20 September 2024 and is based on the Previvorship in the Platform Society research.
How do images of hereditary cancer syndromes become popular on social media? In this article we analyse BRCA images posted on Facebook, Instagram or Twitter between 2022 and 2023. Our analysis shows that images that attract high engagement tend to reinforce racialised and gendered assumptions about the condition, excluding several groups in society (e.g., women who do not undergo breast reconstruction, non-white individuals, individuals with cancers in organs different from the female breast). We discuss the implications for the way these conditions are seen and experienced in contemporary societies and the work done by social media platforms in reinforcing dynamics of exclusion.
Platform visibility and the making of an issue: Vernaculars of hereditary cancer on Facebook, Instagram, TikTok and Twitter
This article was published open access in New Media & Society on 19 February 2024 and is based on the Previvorship in the Platform Society research.
How are BRCA & Lynch syndrome talked about on public social media? In this article we discuss how hereditary cancer becomes “social media visible” to understand the potential impact of social media everyday practices on lay understandings and experiences of the condition. Our work showed that while scientists flood Twitter (X) with self promotion and tentative networking, orgs & corporates advocate on Facebook and creators influence on Instagram & TikTok.
What is Lynch syndrome anyway? An animation.
Whist working on Previvorship in the Platform Society, our student in residence Yifeng Zhang developed a digital animation about Lynch Syndrome. Have a look at Yifeng’s animation to see if you know enough about this condition! If the animation is not for you, check out this info page.
Digital Media and Participatory Cultures of Health and Illness by Stefania Vicari, Routledge
This book explores how the complex scenario of platforms, practices and content in the contemporary digital landscape is shaping participatory cultures of health and illness.
The everyday use of digital and social media platforms has major implications for the production, seeking and sharing of health information, and raises important questions about health peer support, power relations, trust, privacy and knowledge. To address these questions, this book navigates contemporary forms of participation that develop through mundane digital practices, like tweeting about the latest pandemic news or keeping track of our daily runs with Fitbit or Strava. In doing so, it explores both radical activist practices and more ordinary forms of participation that can gradually lead to social and/or cultural changes in how we understand and experience health and illness. While drawing upon digital media studies and the sociology of health and illness, this book offers theoretical and methodological insights from a decade of empirical research of health-related digital practices that span from digital health advocacy to illness-focused social media uses.
Is it all about storytelling? Living and learning hereditary cancer on Twitter.
Journal article published in New Media & Society in 2020.
Storytelling has long been used as a theoretical framework for understanding how we share information and learn about health– and illness– online. But is it all about story telling on social media platforms? To explore how and to what extent personal stories shape health content on these platforms, this article presents an analysis of tweets discussing the BRCA gene mutation–a hereditary cancer condition. Theoretically, the study advances a new conceptual framework to explore social media practices within issue-based and long-lived social media threads. Methodologically, it develops a platform oriented discourse analytic approach. Findings show that non-narrative content is actually more common than storytelling in Twitter conversations about BRCA, with a number of patient advocates acting as gatekeepers of scientific information. Most BRCA storytelling is mediated and shared in third person, with those at the heart of these stories becoming exemplars within the BRCA ‘subculture’.