Attitudes of Family Decision Makers in GTEx

The Genotype-Tissue Expression (GTEx) project, supported by the National Institutes of Health (NIH) Common Fund, has collected and analyzed donated normal human biospecimens from deceased donors to form a resource database and tissue bank aimed at helping researchers better understand the relationship between human genetic variation and inherited susceptibility to disease. As part of the project, BBRB facilitated several studies looking at different aspects of the ethical, legal and social implications (ELSI) of GTEx. The ELSI studies included interviews with family decision makers who had been approached to donate their loved one's tissues, to assess the effectiveness of the consent process in informing the donor families of the potential impacts of participating in the study. Community Advisory Boards were also created to get community input into various issues including the development of improved consenting processes. For more information on GTEx and GTEx ELSI-related studies, please explore the links below.

Genotype-Tissue Expression (GTEx) Project

Selected GTEx ELSI-related publications:

• Consent to a Postmortem Tissue Procurement Study: Distinguishing Family Decision Makers’ Knowledge of the Genotype-Tissue Expression Project.
• Family decision maker perspectives on the return of genetic results in biobanking research
• Confidentiality in Biobanking Research: A Comparison of Donor and Nondonor Families' Understanding of Risks
• Genomic Research with Organs and Tissues Originating from Transplant Donors: Ethical Considerations for the GTEx Project