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Biological Research For Nursing
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*Genes and Gene Therapy
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Gene Therapy and Informed Consent Decision Making: Nursing Research Directions

Rita W. Kaspar, BSN, RN

College of Nursing

Celia E. Wills, PhD, RN

College of Nursing, The Ohio State University, Columbus, Ohio, wills.120{at}osu.edu

Brian K. Kaspar, PhD

Center for Gene Therapy The Research Institute at Nationwide Children's Hospital, Columbus, Ohio, Department of Pediatrics, College of Medicine The Ohio State University, Columbus, Ohio

Recent gene therapy clinical trials have demonstrated significant promise for treating a number of genetic neuromuscular disorders. Although nurses are experienced in educating patients and families about the benefits and risks of conventional therapeutics, there are significant challenges for guiding patients through the decision-making phase of gene therapy clinical trial participation. The first part of this review provides an overview and update on neuromuscular gene therapy, including viral delivery principles and historical progress. The second part discusses risk/benefit perception of gene therapy and factors affecting the decision making for patients interested in participating in a trial. Future challenges for gene therapy are targeted high-efficiency delivery, and additional research on developing patient-centered decision support interventions.

Key Words: gene therapy • informed consent • decision making • neuromuscular disorders

This version was published on July 1, 2009

Biological Research For Nursing, Vol. 11, No. 1, 98-107 (2009)
DOI: 10.1177/1099800409333169


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