The project, dubbed the GeneRosity Registry and funded by the Intermountain Research and Medical Foundation, will compile data from adults who have already purchased direct-to-consumer genetic tests from commercial sites like AncestryDNA, MyHeritage or 23andMe. These participants will have the option to voluntarily upload raw and unprocessed genetic test results to the project’s website.
Along with genetic test results, the researchers will also request medical histories from participants, including health information about himself or herself and three generations of relatives, including children, siblings and parents. The researchers will store this genetic and historical information in a secure database, which may only be accessed by those involved in the GeneRosity Registry project.
The GeneRosity Registry will serve as a research resource to inform future studies. For example, researchers may use data collected for the project to identify genetic markers that determine a patient’s risk of developing select health conditions.
“We’ll be able to use the information people submit to validate new genetic and disease findings, discover new genetic mutation and genetic profiles, and drive future studies,” Stacey Knight, PhD, a cardiovascular and genetic epidemiologist at the Intermountain Medical Center Heart Institute, said in a March 1 statement.
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