Personal genomics and individual identities: motivations and moral imperatives of early users

Abstract

Since 2007, consumer genomics companies have marketed personal genome scanning services to assess users' genetic predispositions to a variety of complex diseases and traits. This study investigates early users' reasons for utilizing personal genome services, their evaluation of the technology, how they interpret the results, and how they incorporate the results into health-related decision-making. The analysis contextualizes early users' relationships to the technology, the knowledge generated by it, and how it mediates their relationship to their own health and to biomedicine more broadly. The results reveal that early users approach personal genome scanning with both optimism for genomic research and scepticism about the technology's current capabilities, which runs contrary to concerns that consumers may be ill equipped to interpret and understand genome scan results. These findings provide important qualitative insight into early users' conceptualizations of personal genomic risk assessment and illuminate their involvement in configuring this technology in the making.