Research combining genetic and medical records with genealogical records provides a unique perspective that benefits medicine globally. A recent publication from University of Utah Health identified a gene responsible for atrial fibrillation in many Utah families. Dr. Martin Tristani-Firouzi, the senior author of the study, said the people of Utah are key contributors to this kind of research.
“So, if more people in Utah knew about this work, I think they would really be excited about it. Because Utah is a place of ancestry, it's a place of genealogy,” Tristani-Firouzi said.
The Utah Population Database is the world’s largest genealogical database linked to medical records. Records from the Utah Genealogical Society are matched with data from birth and death records and driver’s licenses as well certain data from major healthcare providers in the state.
The database is used to study genetic inheritance, but for extensive genetic testing like in Dr. Tristani-Firouzi’s study of atrial fibrillation, additional consent is required.
“What we did then is, under the proper IRB or Institutional Review Board, procedures, we contacted the families and said, Do you want to be a part of a research study? And invariably, they said, Yes, because we want to know what's happening. We have all these relatives with atrial fibrillation,” Tristani-Firouzi said.
Dr. Lynn Jorde, Chair of the Department of Human Genetics at U of U Health, says Utah citizens are interested in contributing to medical research.
“And that's not the case everywhere. A lot of my colleagues, they have a lot of trouble just getting people to participate in research studies. Here in Utah, usually, they're interested in the results, they're happy to think that they may be contributing to health and medicine in general,” Jorde said.
