The purpose of the GeneRosity Registry is to collect health information and DNA testing results from adults who have purchased direct-to-consumer DNA from companies such as AncestryDNA™, 23andMe®, and MyHeritage™ for use in future medical and genetic research studies. You may have purchased the DNA testing for personal reasons, however combining your information with the information from thousands of others will help us determine patterns that affect the prevention, development, and treatment of diseases.
If you willingly participant in this registry, you will be asked to upload your genetic data, provide contact information, and answer questions regarding your health and the health of your family members. This data will be stored on secure, encrypted computers with restricted access. If you have received medical care at an Intermountain hospital or clinic, additional data will be pulled from your medical records. This additional data are routine historical information and laboratory results, which are already accessible to physicians and/or nurses at Intermountain. If you agree, you may be contacted for future genetic and/or medical research studies based on your genetic or medical profiles. Participation in these future studies will be voluntary and will require additional, separate informed consent.
There are no research-specific medications or other procedures required for this registry. There is a potential risk of the inadvertent release of confidential data, however, we are using secure encrypted methods of data upload and storage to minimize this risk. Access to identifying data will be restricted.
There are no expected personal benefits for participating in this research. However, if the researchers/investigators are successful in future research using this data, this will benefit others. You will not receive any monetary or other forms of compensation for participating in this research registry. No individual genetic results will be returned to you.
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