title: Communicating the promise for ocular gene therapies: challenges and recommendations.
abstract: OBJECTIVE
  To identify challenges and pose solutions for communications about ocular gene therapy between patients and clinicians as clinical research progresses.
  
  
  METHODS
  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.
authors.affiliation: School of Public Health, Edmonton, Alberta, Canada.
authors.forename: Shelly
authors.initials: S
authors.lastname: Benjaminy
authors.affiliation: School of Public Health, Edmonton, Alberta, Canada.
authors.forename: Stephanie P
authors.initials: SP
authors.lastname: Kowal
authors.affiliation: Department of Ophthalmology and Visual Sciences, University of Alberta, Edmonton, Alberta, Canada.
authors.forename: Ian M
authors.initials: IM
authors.lastname: MacDonald
authors.affiliation: School of Public Health, Edmonton, Alberta, Canada. Electronic address: tbubela@ualberta.ca.
authors.forename: Tania
authors.initials: T
authors.lastname: Bubela
mesh_terms: D005128:Eye Diseases / Q000628:therapy*; D015316:Genetic Therapy; D058015:Health Communication; D006801:Humans; D010353:Patient Education as Topic; D010358:Patient Participation; D010817:Physician-Patient Relations