At-risk subjects or casual content creators? User and expert perspectives on direct-to-consumer genetic testing and genetic identity work on YouTube

With a commercial testing kit, people can test for genetic diseases and predispositions at home without the assistance of medical institutions. The DIY tests have fundamentally reshaped the accessibility of genetic information. This article examines conflicting user and expert discourses on direct-to-consumer genetic testing in 27 YouTube-videos. While genetic experts are wary of the tests and tend to enforce professional gatekeeping around potentially impactful genetic information, test users utilize the tests as rich bio-narrative – rather than purely diagnostic – technologies that occasion interesting and affectively engaging acts of storytelling. These narratives can be used to gain visibility on the platform and, entangled with other forms of knowledge about the self, in performances of genetic identity work. Paradoxically, expert videos emulate a range of aesthetic and stylistic characteristics from user videos. These new hybrid forms of health communication pinpoint the challenges of performing expert identities on algorithmically curated platforms today.