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Shelly Benjaminy, Tania M. Bubela, Mark T. Bieber, Ian M. MacDonald; Hope and hype in sight: Sensationalism in choroideremia gene therapy. Invest. Ophthalmol. Vis. Sci. 2012;53(14):1435.
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Emerging ocular gene therapy (GT) clinical trials are raising patient hopes for a treatment for choroideremia (CHM), a degenerative retinopathy leading to blindness. GT trials raise the practical necessity of communicating risks and benefits to patients in light of a perceived ‘cure’ while avoiding the hype that has historically undermined this field of translational medicine. We hypothesize that communication about GT will be differentially interpreted by patients in the context of a potential treatment.
We examined communications about ocular GT in two contexts: (1) word frequency analysis exploring tone of GT coverage in US, UK and Canadian newspapers (1990-2010) (nUS=5438; nUK=1522; nCA=948) using search algorithms that captured synonyms for GT in Lexis Nexis and Factiva databases; and (2) analysis of clinical communications about a CHM GT clinical trial. We conducted semi-structured interviews with 17 CHM patients and 10 clinicians responsible for their care about expected therapeutic benefits, perceived risks, and timeline of hopes for clinical implementation. We analyzed interviews using a grounded theoretical approach.
Media coverage of ocular GT described a range of outcome goals including finding a cure for CHM. Clinicians, however, emphasized that the goal of early-phase GT trials should be described in terms of a treatment rather than a cure. Patient expectations were more conservative than experts believed, centering on a hope that CHM GT will halt the progression of vision loss rather than reverse it. While clinicians believed that patients are focused on gaining access to GT rather than ensuring its safety, our analysis reveals salient patient worries about GT safety (ex. risk of accelerating vision loss). Clinicians expressed that their patients hope GT will be available sooner than experts expect, and this was confirmed by patient interviews.
Our findings about patient safety concerns and conservative benefit expectations suggest that patients are well-informed and process media representations critically to avoid hype about CHM GT. Nevertheless differences between clinician understanding and patient perspectives remain. Bridging this gap will facilitate responsible communications about CHM GT and aid in the translation of this biotechnology.
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