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Permanent link (DOI): https://doi.org/10.7939/R3890F

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

Descriptions

Other title
Subject/Keyword
phase I
choroideremia
media
gene transfer
ethics
Type of item
Thesis
Degree grantor
University of Alberta
Author or creator
Benjaminy, Shelly
Supervisor and department
MacDonald, Ian (Ophthalmology)
Bubela, Tania (Public Health Sciences)
Examining committee member and department
Jardine, Cynthia (Centre for Health Promotion Studies)
Caulfield, Tim (Law)
Department
School of Public Health Sciences
Specialization
Health Policy Research
Date accepted
2013-01-26T16:18:30Z
Graduation date
2013-06
Degree
Master of Science
Degree level
Master's
Abstract
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.
Language
English
DOI
doi:10.7939/R3890F
Rights
Permission is hereby granted to the University of Alberta Libraries to reproduce single copies of this thesis and to lend or sell such copies for private, scholarly or scientific research purposes only. Where the thesis is converted to, or otherwise made available in digital form, the University of Alberta will advise potential users of the thesis of these terms. The author reserves all other publication and other rights in association with the copyright in the thesis and, except as herein before provided, neither the thesis nor any substantial portion thereof may be printed or otherwise reproduced in any material form whatsoever without the author's prior written permission.
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File format: pdf (Portable Document Format)
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File size: 5279059
Last modified: 2015:10:12 21:01:02-06:00
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Status message: File header gives version as 1.4, but catalog dictionary gives version as 1.3
File title: Microsoft Word - Benjaminy Thesis Revised.docx
File author: Shelly Benjaminy
Page count: 178
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