Ethical, Legal, and Social Issues Substudy in Relation to the GTEx Project

Completed · Not applicable

Conditions studied: Standard Training, Online Training

In brief

The Ethical, Legal and Social Issues Substudy in relation to the Genotype Tissue Expression Project (GTEx) aims to describe tissue requesters' approach to discussions about donation to GTEx and to assess the determinants of families' and patients' willingness to donate to GTEx. It also explores ethical issues such as privacy, risks, and release of incidental findings and recommend best practices for conducting authorizations and training requesters.

Key facts

Study ID

NCT02887339

Run by

Temple University

People needed

512

Starts

2013-03-01

Expected to finish

2017-12-01

Last updated by the study team

2021-03-30

Who can join

Age: any. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• Participants must either be a:
• family decision maker approached to donate their loved one's tissues to the GTEx project or
• a staff person at an OPO that approaches family decision makers for the GTEx project.

You may not qualify if…

• Persons who neither approached for GTEx or were approached are excluded from participation.

Where it is running

• Virginia Commonwealth University — Richmond, Virginia, United States

Full record on ClinicalTrials.gov

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