JMIR Publications

ABSTRACT

Background:

Genetic testing has become a common way of identifying a woman’s risk of developing hereditary breast and ovarian cancer, however, not all medical providers have the necessary information to support patients interested in genetic testing, nor do they always have the proper information for patients once they have been diagnosed. Therefore, many previvors, the name of those who have tested positive for the BRCA genetic mutation, have taken to social media to inform others about the importance of genetic testing and explain to them how to understand their test results. Historically, those desiring to speak about their medical issues online have sought out structured support groups or chat rooms, however, many previvors today are instead posting on their own personal social media accounts and creating more niche communities.

Objective:

This study aimed to examine why BRCA previvors are sharing content on their personal social media accounts and how posting online in this way serves a purpose for their larger community.

Methods:

A total of 16 semi-structured interviews were conducted with individuals who post about their experience being diagnosed with the BRCA genetic mutation and their subsequent treatment on their personal social media accounts specifically for followers interested in their medical journey. The interviews were recorded, transcribed, and coded by an experienced qualitative researcher and a graduate student using inductive techniques and a reflexive thematic analysis was applied to the transcripts.

Results:

The results suggest BRCA previvors want to control the narrative around their personalized medical experiences rather than participating in existing groups or chat rooms. Controlling their own story, rather than adding to existing narratives, gives previvors a sense of control. It also allows them to set boundaries around the types of experiences they have online when sharing their medical journey. Finally, previvors said they feel they’re serving the larger BRCA community by each sharing their individual journeys to hopefully avoid stereotyping and homogenizing the experience of BRCA patients.

Conclusions:

Research with the objective of understanding the experiences of BRCA previvors should include exploring how and why they talk about their journeys, especially due to the lack of knowledge BRCA previvors say many of their medical providers have. We suggest further research should examine how other BRCA patients, especially BIPOC patients, are navigating their own content creation, especially considering content moderation policies that social media platforms are continuing to implement that directly impact users’ ability to share about their medical experiences.