The New Genetics, Same Old Surgeries team has undertaken previous research exploring various aspects of digital cultures, science communication, data science and the sociology of health and illness. Specifically, NeGen-SOS builds on research that has explored online discourses around, and lived experiences of, rare and hereditary health conditions.
One example of such work is Previvorship in the Platform Society: Cancer Genetic Risk in the Digital Age, funded by the Leverhulme Trust, led by Stefania Vicari with Hannah Ditchfield which ran from February 2022 to November 2025. The project aimed to investigate how everyday social media use may influence how hereditary cancer risk is understood in the public domain and experienced by carriers and their families. We conducted social media analyses, interviews with carriers of hereditary cancer syndromes (specifically BRCA and Lynch syndrome), and a stakeholder workshop to identify key patterns in content creation, representation, and the experiences of carriers online. Ultimately, its findings help us understand how this influence can be harnessed for the good.
The New Genetics, Same Old Surgeries project develops this work by focusing specifically on the cultural discourses, and lived experiences of, cancer genetic risk in the context of women’s health and gynaecological cancers.
To find out more about our previous research, take a look at our resources and publications.