Lay expertise
Managing genetic risk and responsibility implies developing knowledge and techniques to care for one's self and family. This usually involves negotiating new and old relationships (e.g., with health professional and family) to accommodate risk-derived uncertainty in everyday life. Studies that have explored these dynamics have shown that genetic risk and responsibility prompt individuals to become extremely active in seeking and understanding technical information, developing a sort of "proto-professionalism" to get or stay well. In fact, individuals with genetic conditions are likely to seek and learn technical information for understanding and managing their condition, combining expert knowledge with knowledge derived from their everyday experience of the condition. In doing so they combine lay and expert understandings of health, illness and prevention.
There is clear evidence that cancer previvors turn to social media to seek, learn and share information about their conditions. It is also evident that this information often derives from a complex combination of lay and expert sources, like personal stories and scientific publications. However, even in research based on the analysis of interactions on online spaces (e.g., webforums, chats, microblogging sites), little attention has been drawn to how the platform itself influences how individuals cope with genetic risk and responsibility and build their expertise around it.
Do you want to read more? You can start where we started
On lay expertise
Epstein, S., 1995. The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Science, technology, & human values, 20(4), pp.408-437.
Rabeharisoa, V., Moreira, T. and Akrich, M., 2014. Evidence-based activism: Patients’, users’ and activists’ groups in knowledge society. Biosocieties 9: 111–128.
On lay expertise and genetic risk
Novas, C. and Rose, N., 2000. Genetic risk and the birth of the somatic individual. Economy and society, 29(4), pp.485-513.
Petersen, A., 2006. The best experts: The narratives of those who have a genetic condition. Social Science & Medicine, 63(1), pp.32-42.
On lay expertise and digital media
Akrich, M., 2010. From communities of practice to epistemic communities: Health mobilizations on the internet. Sociological Research Online, 15(2), pp.116-132.
Bellander, T. and Landqvist, M., 2020. Becoming the expert constructing health knowledge in epistemic communities online. Information, Communication & Society, 23(4), pp.507-522.
Maslen, S. and Lupton, D., 2019. ‘Keeping It Real’: Women's enactments of lay health knowledges and expertise on Facebook. Sociology of Health & Illness, 41(8), pp.1637-1651.
On lay expertise, cancer genetic risk and digital media
Allen, C.G., Roberts, M., Andersen, B. and Khoury, M.J., 2020. Communication about hereditary cancers on social media: a content analysis of tweets about hereditary breast and ovarian cancer and lynch syndrome. Journal of Cancer Education, 35(1), pp.131-137.
Vicari, S., 2021. Is it all about storytelling? Living and learning hereditary cancer on Twitter. New Media & Society, p.1461444820926632.
