Over the past two decades, genetic testing has undergone major shifts in its accessibility and in its nature. Historically, it primarily involved analysis of single genes selected on the basis of symptoms or family history, and was available only to a few. Now, options range from diagnostic clinical genomic tests, to broader screens offered to 'healthy' populations, to direct-to-consumer tests offering to explore ancestry. As genetic testing becomes an increasingly 'everyday' encounter, we sought to explore how the topics of genetics (and genomics) were considered in the Mass Observation Project, an archive of writing by 'ordinary' people about everyday life in Britain. 55% of the 147 respondents had personal experience of genetic testing or knew someone who had, typically to explore ancestry. Responses often gave the sense of genetic testing as a powerful tool in healthcare with results that were fairly definitive. Genomic testing was typically written about as an amplification of genetic testing, generating information of similar solidity. Writers threaded together personal experiences with insights drawn from a wide variety of media, often quite old, in outlining their ideas. While many positioned genetics as outside their remit, respondents engaged in depth with the opportunities and challenges raised, advocating for ethical/societal considerations to form a key part of decision-making regarding genetics. Our analysis shows that people without prior experience of clinical genetic testing may yet have a wealth of experiences and exposures sculpting their expectations as to what testing stands to bring. Consent conversations may benefit from exploring these.
Horton et al. (Wed,) studied this question.