Table 1.

Essential GTEx Consent Elements

A description that genetic and genomic research may be conducted on the donated biospecimens

The donated biospecimens may be shared with researchers who are approved by an access committee, including international researchers

The donated biospecimens may be used for broad future research

Commercial products may be developed using the donated biospecimens however the donor families will not financially profit from these products

There may be a risk of loss of privacy and confidentiality

The biospecimens may be withdrawn; however, molecular data may not be retrieved once it is generated

No individual genetic information will be returned to the next-of-kin or legal representative; however, results from the collective GTEx biospecimen set will be available on the GTEx portal ((http://www.gtexportal.org/home) and the NIH's National Center for Biotechnology Information's database of Genotypes and Phenotypes (dbGAP) http://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs000424.v1.p1