As a parent or grandparent, you would do anything to prevent your child from developing the health problems that may have caused suffering for you or your own parents. Intermountain Healthcare researchers are inviting adult volunteers to share their direct-to-consumer DNA testing results from commercial sites, like AncestryDNA™, MyHeritage™, or 23andMe®.
Genetic information we inherit from our parents can contribute to our risk for many health conditions, such as heart disease and cancer. Our DNA is made up of more than 3 billion individual pairs of genetic codes, and searching through these codes takes a lot of time and a lot of information from many people. By using existing genetic test results and electronic health histories, we can decrease costs and speed up the time to new genetic discoveries.
The Intermountain Healthcare Generosity Registry has been created for volunteers to upload their raw and unprocessed genetic results and to provide personal and family health histories. This data will be used in future medical and genetic research studies to better understand patterns behind specific diseases and medical treatment responses, validate new genetic and disease findings, and discover new genetic disease profiles.
“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,” said Stacey Knight, PhD, MStat, a cardiovascular and genetic epidemiologist at the Intermountain Medical Center Heart Institute. “If the GeneRosity Registry’s researchers are successful in future research using these data, others will benefit greatly.”
HOW DOES THE GENEROSITY REGISTRY WORK?
If you are interested in participating in this registry, you will need to sign-up on the registry’s webpage www.GeneRosityRegistry.org. The registry is conducted completely online and doesn’t require any study-related visit or phone call. On the registry’s website you will be asked to do the following:
- Watch a short video explaining the registry and indicate your agreement to participate
- Provide your name and contact information
- Answer a few questions
- Upload your raw genetic data
- Fill out a personal and family health history using a health-related family tree application
There are no expected personal benefits for participating in this research, but if researchers are successful in future studies using this data, others will benefit. Because we are asking this to be done without any monetary or other forms of compensation, we have called this the GeneRosity Registry.
Please use a secure computer to upload your DNA data to the registry. Public computers and WiFi may not be secure.
To learn more about how to participate, visit www.GeneRosityRegistry.org. The GeneRosity Registry is funded by the generous donors to the Intermountain Research and Medical Foundation. For more information or to give, go to ImedicalFoundation.org or 801-507-2040.