Informed Consent in Gene Transfer Research
| The goal of this project was to understand how the prospect of direct benefit is presented to and understood by research subjects in gene transfer research (GTR) studies. Producing well-designed and tested survey instruments that were to be administered to principal investigators, study coordinators and subjects in GTR studies involved a collaborative questionnaire development effort with UNC Department of Social Medicine investigators. The SRU played a major role in this effort through the developing and reviewing of instruments, devising a cognitive testing plan and protocol, implementing several rounds of cognitive interviews, analyzing cognitive interview results, and programming final versions of the survey instruments for CATI administration. From September 2000 to May 2002, the SRU-Social Medicine team completed 70 telephone interviews with subjects from selected gene transfer research studies. | |
| Principal Investigator: |
Gail Henderson, PhD UNC-Chapel Hill Department of Social Medicine |
| SRU Investigators: | Ashley Bowers, MS |
| Source: | NIH |
| Dates: | March 1999 – January 2002 |
Studies:
E-Mail: CSRL@unc.edu ¤¤ Director's Office: (919)962-3282 ¤¤ Job Line: (919)962-2458 ¤¤ Employee Line: (919)966-6319
