INFORMED CONSENT IN GENE TRANSFER RESEARCH

Human Genome Research

Investigators

Linked publications & trials

Abstract

This project examines how the "benefits" of gene transfer research are described and understood by principal investigators, study coordinators, subjects, IRB chair and consent forms. One phase of this study involve telephone interviews with the principal investigator, study coordinator, 10 subjects and IRB chair in 40 studies . Currently approximately 10 sites have been enrolled. Another part of this projects involves the analysis of approximately 300 consent forms that describe gene transfer research. Approximately 35 consent forms have been coded.