Shelly Benjaminy1, Stephanie P Kowal1, Ian M MacDonald2, Tania Bubela3. 1. School of Public Health, Edmonton, Alberta, Canada. 2. Department of Ophthalmology and Visual Sciences, University of Alberta, Edmonton, Alberta, Canada. 3. School of Public Health, Edmonton, Alberta, Canada. Electronic address: tbubela@ualberta.ca.
Abstract
PURPOSE: To identify challenges and pose solutions for communications about ocular gene therapy between patients and clinicians as clinical research progresses. DESIGN: Literature review with recommendations. METHODS: Literature review of science communication best practices to inform recommendations for patient-clinician discussions about ocular gene therapy. RESULTS: Clinicians need to employ communications about ocular gene therapy that are both attentive to patient priorities and concerns and responsive to other sources of information, including overly positive news media and the Internet. Coverage often conflates research with therapy-clinical trials are experimental and are not risk free. If proven safe and efficacious, gene therapy may present a treatment but not a cure for patients who have already experienced vision loss. Clinicians can assist patients by providing realistic estimates for lengthy clinical development timelines and positioning current research within models of clinical translation. This enables patients to weigh future therapeutic options when making current disease management decisions. CONCLUSIONS: Ocular gene therapy clinical trials are raising hopes for treating a myriad of hereditary retinopathies, but most such therapies are many years in the future. Clinicians should be prepared to counter overly positive messaging, found in news media and on the Internet, with optimism tempered by evidence to support the ethical translation of gene therapy and other novel biotherapeutics.
PURPOSE: To identify challenges and pose solutions for communications about ocular gene therapy between patients and clinicians as clinical research progresses. DESIGN: Literature review with recommendations. METHODS: Literature review of science communication best practices to inform recommendations for patient-clinician discussions about ocular gene therapy. RESULTS: Clinicians need to employ communications about ocular gene therapy that are both attentive to patient priorities and concerns and responsive to other sources of information, including overly positive news media and the Internet. Coverage often conflates research with therapy-clinical trials are experimental and are not risk free. If proven safe and efficacious, gene therapy may present a treatment but not a cure for patients who have already experienced vision loss. Clinicians can assist patients by providing realistic estimates for lengthy clinical development timelines and positioning current research within models of clinical translation. This enables patients to weigh future therapeutic options when making current disease management decisions. CONCLUSIONS: Ocular gene therapy clinical trials are raising hopes for treating a myriad of hereditary retinopathies, but most such therapies are many years in the future. Clinicians should be prepared to counter overly positive messaging, found in news media and on the Internet, with optimism tempered by evidence to support the ethical translation of gene therapy and other novel biotherapeutics.