GTEx: Understanding Genetics and Diseases

In 2010 the National Institutes of Health Common Fund launched the Genotype-Tissue Expression (GTEx) project to help scientists understand how different genes might lead to certain types of diseases. The generosity of patients and families who donated human tissue played a significant part in the project’s success.

NDRI worked with teams at Virginia Commonwealth University and Temple University on related research — the Ethical, Legal and Social Implications (ELSI) study — to understand the laypersons’ ideas and beliefs about tissue donation for research. The team recruited families who donated loved ones’ tissues for a Community Advisory Board (CAB) and asked members to reflect on and talk about their perspectives on the experience of donating tissue to GTEx and what it meant to them.

Hear what GTEx donor families say about the importance of tissue donation