• Will I get back information about my genetic risk for diseases?

    Because the purpose of this registry is to look at patterns of DNA results from a large collection of participants, volunteers will not receive any information about individual genetic risks.

  • Will I get reimbursed for participating in this research?

    No; as this registry is voluntary, there will be no compensation for participants.

  • Who will have access to my information and data?

    Researchers from the GeneRosity Registry and their Intermountain IT professionals will have access to the data from this project. Other collaborators within and outside Intermountain Healthcare will have restricted access to the data, based on your responses to questions, and only after approval by the Intermountain Institutional Review Board.

  • Why do you need my personal contact information?

    Contact information is necessary to contact participants for future voluntary research studies. For Intermountain patients involved in the GeneRosity Registry, this information will be used to facilitate linkage to their medical records.

  • What data will be pulled from my Intermountain medical record?

    For Intermountain patients, any medical information from clinical visits, inpatient stays, test results, and more may be used in this registry. These may include, but are not limited to, diagnoses, medical test results, outcomes of medical procedures, and responses to medication.

  • What types of analyses will be done using the data provided?

    The study researchers will be comparing genetic data for those with various disease and treatment patterns. For example:

    • Determining the exact strand on which a certain disease-causing code may be located
    • Identifying the specific genetic mutation that contribute to disease risk
    • Comparing the disease risk within a family and the genetics of the family
  • How do I download my genetic data from AncestryDNA, 23andMe®, or MyHeritage?

    Here are three links that show the process for genetic data uploading:

    And here are step-by-step instructions for AncestryDNA and 23andMe.

  • How do I use the Our Family Health tool?

    Here are step-by-step instructions for how to use the Our Family Health tool for entering family health data and uploading this into the GeneRosity Registry.

  • How do navigate the questionnaire for the study?

    Here is a step-by-step instruction sheet for the GeneRosity Registry main study questionnaire.

  • What if I have DNA results from multiple companies?

    If you have multiple DNA results from different companies, please upload them all. Any possible information is useful.

  • Can my non-adult children or grandchildren participate?

    No, only individuals that are 18 years or older can participate in this registry at this time.