Funding Agency: National Disease Research Interchange (NDRI)
Funding Period: March 2013 – October 2016
The Genotype-Tissue Expression (GTEx) Project offers a biobanking resource for the scientific community to study human gene expression and its relationship to common diseases like diabetes, Alzheimer’s, heart disease, and cancer. The goal of the GTEx project is to thoroughly collect genotype tissues from a variety of deceased organ and tissue donors. In addition to biobanked tissue, the GTEx project provides researchers an atlas of genomic data paired with donor medical and social history information.
As part of the GTEx Project, the Ethical, Legal and Social Issues (ELSI) sub-study seeks to understand the factors that affect consent to tissue donation for biobanking purposes and to improve the informed consent process. The ELSI project interviewed the family decision makers who are approached to donate to GTEx. In addition, the ELSI study investigated the impact of the stressful environment in which the GTEx donation requests occur and developed and tested a communication training program for organ procurement organization staff who request for tissue donation to the GTEx biobank. A preview of the training program can be found below.
We convened English- and Spanish-speaking Community Advisory Boards (CABs), which guided the progress of this project. The CABs were composed of community members and families, who were given the option to donate tissues for research. Research-related materials, including an interview with members of the English-speaking CAB, are available below.
Virginia Commonwealth University
A Preview of the GTEx Training