Thanks to a collaboration between BYU’s Center for Family History and Genealogy and the University of Washington, a public health initiative has launched with a unified goal to prevent hereditary cancer.
But what does family history have to do with preventing a deadly disease?
“A number of medical conditions are hereditary, so we can learn about the immediate family medical history and inform our doctors when we visit,” said Jill Crandell, director of the BYU Center for Family History and Genealogy and associate professor of family history. “With DNA testing among the general population, it’s now possible to learn of hereditary diseases that have come down to us from an ancestor many generations back. It’s possible to contact distant cousins to inform each other of extended family risks. Hereditary cancer is one disease where knowing your genealogy and your extended family medical history could save your life.”
Crandell and the BYU Center for Family History and Genealogy (CFHG) are collaborating with Dr. Brian Shirts, M.D., Ph.D., an associate professor of laboratory medicine and pathology at the University of Washington, to fight hereditary cancer with family history in a project called Connect My Variant.
“Oftentimes, someone knows they’ve got a history of cancer in their family and can talk to their doctor and take preventative action,” said Shirts. “They can tell their relatives and help save their lives as well.”
According to Shirts, hereditary cancer can essentially be eliminated if people know their family history. Inherited cancer-causing gene variants (also called mutations) in genes like BRCA1 and BRCA2 cause more than a 50 percent lifetime risk of breast or ovarian cancer. Inherited variants in other genes cause a high risk of colon cancer and other cancers.
Identifying such variants in living relatives can help prevent cancer for a few people. Tracing the variant back to a common ancestor can help prevent cancer in dozens of people, but can be challenging. That’s where the BYU Center for Family History and Genealogy comes in.
“After Dr. Shirts identifies participants who have the variant, he sends them to our team at BYU. We’re able to do the research on their family lines and help identify which ancestor may have had the variant,” said Crandell. “Once we’ve identified the ancestor, we can do research and find relatives that the participant can contact and tell them of their potential increased chance of cancer. This is helpful because most people don’t know their relatives beyond first cousins.”
It’s not an easy process, but thanks to technology, family history research is more accessible than ever. Research starts with the BYU team working directly with the participant to gather information about their known relatives. Then, lineage research begins. BYU student researchers combine DNA and traditional genealogical research as they comb through family history records and databases at websites such as FamilySearch and Ancestry. They scour death records and obituaries to construct the participants’ family trees and trace cancer-causing variants to a common ancestor.
“Students do the research,” said Crandell. “We’re here to give the students mentored learning experiences to help them develop their skills beyond the classroom.”
The process, methodology, and research findings have to be completely accurate to have full confidence in cancer-causing genetic mutations in a family line.
“This is a very serious thing to get right,” said Julie Stoddard, coordinator at the Center for Family History and Genealogy. “If there’s any uncertainty, we don’t write it up. We combine DNA research with traditional records to make sure we’re following the DNA lines and verifying we’ve got the right lines.”
Collaborating with BYU on this project was an easy decision, said Shirts. The BYU Center for Family History and Genealogy is one of BYU’s academic centers and offers support to students pursuing family history degrees. Students who major in family history go on to work in many different fields, including law, medicine, libraries, and archives.
“BYU has the best genealogy program in the world, so it made sense for a partnership on this project,” said Shirts. “BYU is focused on making genealogy more available and more innovative than ever before, and it was clear that this was a place that shared our goals to help the world.”
As more participants identify a common ancestor who had the genetic mutation and connect with their living relatives who descend from that ancestor, more lives can be saved.
“Knowing your family history is important, but knowing how you might be impacted by your heritage and using that information to help save the life of one of your cousins is impactful,” said Shirts.
The Connect My Variant project is funded by the Seattle-based Brotman Baty Institute for Precision Medicine. If you are interested in participating in the project and know of cancerous risk mutations in your family’s genetic heritage, you can sign up at ConnectMyVariant.org.
The BYU Center for Family History is supported by endowment funds and generous donations. To learn more about the BYU Center for Family History and Genealogy, go to cfhg.byu.edu.