An exploration of why men with severe haemophilia might not want gene therapy: The exigency study.
Simon FletcherKathryn JennerMichael HollandSteve ChaplinKate KhairPublished in: Haemophilia : the official journal of the World Federation of Hemophilia (2021)
There are many concerns about gene therapy, including eligibility, effectiveness and safety, which may result in individuals declining it as a therapy. These concerns may recede as more data are published. This study reveals a psychological dynamic around self-identity and belonging for PwH. The nature of this dynamic is poorly understood and needs exploration to facilitate support for those making decisions about gene therapy.