Researchers at US-based Medical Group, Intermountain Healthcare, are developing a global DNA registry, called the GeneRosity Registry, to help medical researchers improve the diagnostic and treatment of genetic health problems.
As part of the registry’s development, the researchers from the Intermountain Medical Center Heart Institute are seeking existing genetic test results and electronic health histories from people around the world.
The researchers are asking adults who’ve already purchased direct-to-consumer DNA testing at commercial sites like 23andMe, AncestryDNA and MyHeritage to voluntarily upload their raw and unprocessed genetic results, or genotypes, after registering on www.GeneRosityRegistry.org. They’re also requesting participants to provide personal and family health histories.
The researchers hope to reach a wide audience to start the conversation about what benefits sharing existing results can have not only for people today, but also for future generations.
“Our project is creating a resource for future studies,” said a Cardiovascular and Genetic Epidemiologist at the Intermountain Medical Center Heart Institute, Dr Stacey Knight, PhD, MStat.
“A person’s DNA is made up of more than three billion individual pairs of genetic codes, but finding specific genes that contribute to health problems isn’t easy. That’s why we’re asking people to submit their DNA results, along with as much personal and family medical history as they know,” continued Dr Knight.
Families have many factors in common, including their genes, environment and lifestyle. Together, these factors can give clues to medical conditions that may run in a family. By identifying patterns of disorders among relatives, medical researchers can determine whether an individual, other family members, or future generations may be at an increased risk of developing a particular condition.
“A family medical history can identify people with a higher-than-usual chance of having common disorders such as heart disease, high blood pressure, stroke, certain cancers and diabetes,” said Dr Knight said.
“These complex disorders are influenced by a combination of genetic factors, environmental conditions, and lifestyle choices,” continued Dr Knight.
The data collected for this new project will allow researchers who participate in the registry to search more specifically for genetic markers related to what they’re studying.
“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 Dr Knight.
“If the GeneRosity Registry’s researchers are successful in future research using these data, others will benefit greatly,” continued Dr Knight.
All of the information will be stored in a secure database accessed only by researchers involved in the GeneRosity Registry.
Contributors to the registry don’t have to submit lab samples, take medications or complete any procedures in order to participate. The project is conducted completely online and doesn’t require any study-related visits or phone calls.