First-in-human gene therapy clinical trials in the media: Exploring patient narratives

Promising results reported in genetic therapy clinical trials and recent US Food and Drug Administration approvals have attracted media attention. This critical content analysis examines themes and narrative framings present in feature articles published in US news media sources following patients involved in first-in-human clinical trials of genetic therapies. Articles were collected through focused searches across US news websites and LexisNexis databases in the period from 01 January 2017 to 06 April 2022. Forty-three articles met inclusion criteria (n = 13 from database searches, n = 30 from external searches). Articles were diverse across genetic conditions, news sources, and media types. Three dominant themes emerged: (1) Impacts of Living with Genetic Condition, (2) Consequences of Receiving Gene Therapy Treatment, and (3) Risks of Gene Therapy. Narrative frames included hope and caution. Results are discussed in relation to how the value of patient narratives and content may be situated alongside the interests of different actors.