Impact of Donation
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.