Informed consent in gene transfer research

Human Genome Research

Investigators

Linked publications & trials

Abstract

The purpose of this study to is to understand how the participants (Principle Investigators (PIs), Study Coordinators (SC), Subjects, IRBS) understand the benefits of gene transfer research. The study will focus on the the relationship between research and treatment, the dual roles of researcher and clinicain, and the expectations of benefit by the participants. The study includes intervews with PIs, SCs, Subjects, and IRB Chairs. It also includes an analysis of gene transfer consent forms. Over 250 consent forms have been obtained and coding is almost complete. The interviews with IRB chairs is almost complete. The remaining interview are ongoing.