Participants

Our research is conducted in several ways, and one of our more common methods involves enrolling participants to study families that have a high incidence of a particular disease. By studying the genetic makeup of related affected individuals, we can identify the genes or variants responsible for the disorder in family pedigrees.

Frequently Asked Questions:

  • Are you able to provide me with the results of any tests that are done using my sample?
    • Because of IRB (Institutional Review Board) protocol, if incidental findings are found on sequence analysis of a subject’s DNA (e.g., disease causing mutation in BRCA1), we may refer you to a genetic counselor to follow-up on those results if you are interested. We use research protocols for sequence analyses that are not generated in a CLIA certified laboratory; hence, we cannot provide definitive information.  
  • I have a family member who has the same disease as I do. Can I refer them to you for this study?
    • Yes, but the relative must contact the study coordinator personally. You, or they, can call (801) 581-5070 for more information.
  • If you find that I have a variant that is known to put me at a higher risk for a disease, are you allowed to tell me?
    • Our samples are collected appropriately for research, but not for clinical care, so we can never return any results. However if you sign the appropriate place on the consent form we can put you in contact with genetic counselors if we think your results suggest that it is important.

For more information regarding any of our studies, please call (801) 581-5070.

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