Ocular gene transfer communications: Developing ethical frameworks for phase I choroideremia clinical trials

  • Author / Creator
    Benjaminy, Shelly
  • I investigate how to ethically communicate about a phase I gene transfer trial for choroideremia, a blinding retinopathy, in light of this novel biotechnology’s portrayal as a potential ‘cure’. I analyzed gene transfer communications in three contexts: (1) interviews with clinicians (n=15), patient advocates (n=6), and patients (n=20) about their perspectives on risks, benefits, and timeframes for clinical implementation of ocular gene transfer; (2) a content analysis of Canadian (n=26), American (n=55), and British (n=77) newspaper articles about ocular gene transfer; and (3) interviews with choroideremia patients (n=20) about their impressions (a) of general media coverage about gene transfer, and (b) in response to a YouTube video about a completed ocular gene transfer clinical trial for a related retinopathy. The thesis provides recommendations for clinicians and patient advocates about how to communicate about the promise of gene transfer in the context of clinical realities for the research and for patients.

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  • Degree
    Master of Science
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    This thesis is made available by the University of Alberta Libraries with permission of the copyright owner solely for non-commercial purposes. This thesis, or any portion thereof, may not otherwise be copied or reproduced without the written consent of the copyright owner, except to the extent permitted by Canadian copyright law.