The FDA authorization of direct-to-consumer genetic testing for three BRCA1/2 pathogenic variants: a twitter analysis of the public’s response

• Authors: Megan C Roberts, The National Cancer Institute, Rockville; Caitlin G Allen, Emory University; Brittany L Andersen, Boston University College of Communication
• Journal Title: JAMIA Open
• Volume: Volume 2, Number 4
• Publisher: Oxford University Press (OUP) | 2019-12-01, Pages 411-415
• Type of Work: Article | Final Publisher PDF
• Publisher DOI: http://doi.org/10.1093/jamiaopen/ooz037
• Keywords: breast cancer; genetic testing; social media; FDA; direct-to-consumer testing

Abstract

Objectives In March 2018, the Food and Drug Administration (FDA) announced its authorization of a direct-to-consumer (DTC) genetic test for three pathogenic BRCA1/2 variants. We sought to determine to whether social media discussion increased following the authorization, who was driving social media conversations, and what topics were discussed. Methods Using Crimson Hexagon, we described tweets before, during, and after the FDA announcement authorizing 23andMe to return BRCA1/2 results (3/4/18–3/10/18). We conducted qualitative coding of a subset of 605 tweets to better understand Twitter communication. Results We identified 11 055 twitter posts across the week of FDA’s announcement. Twitter discourse about 23andMe and the FDA authorization peaked the day following the FDA’s press release. Most tweets (48.6%) were informational and 26.3% were either expressing opinions (about 23andMe and/or FDA authorization, 14.9%) or testimonials (personal experiences with genetic testing, 11.4%). The types of tweets varied over the week-long period (P <  .001). Discussion Twitter discussion about the FDA’s authorization of DTC for three pathogenic BRCA1/2 variants increased immediately following the announcement. As more genetic technologies are brought to the DTC market, social media sites, like Twitter, will play a role in disseminating this information, providing a platform for information exchange, consumer testimonials, opinion pieces, and research.