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Twenty minutes to complete your medical family tree could save your life and empower you and your family to get the best health care possible. That's the root of the Brigham and Women's Family History Project, a year-long initiative launched Monday. The U.S. Surgeon General tapped BWH to be the first employer in the U.S. to encourage employees to voluntarily complete the “My Family Health Portrait” tool.
On an individual level, this tool could ensure participating members of the BWH family receive the most appropriate health care from their primary care physician. On a national and worldwide level, BWH's participation in this project will strengthen the role of preventive and predictive genetics in health care.
“We could show the world that collecting our family medical histories is valuable and that it could someday save our lives,” said Cynthia Morton, PhD, director of Cytogenetics, under whose leadership the demonstration project was initiated.
While BWHers help themselves and their families throughout this project, they can also help shape and refine the project for the rest of the country. Michael Murray, MD, clinical chief in the Division of Genetics and Family Health Project leader, plans to survey participants about how easy the family tree was to complete and what could make it more user-friendly. Murray's survey and research focuses on the use of the tool, not individuals' family medical histories.
Only the participant will see that information. The U.S. Surgeon General has set up a secure Web site so that participants' data will not be stored in any system. Participants can store their information only by saving it to their own desktop, file or disk. Those who complete the form at work should save it on a disk rather than the desktop, or download the printable version-available on the Intranet-and fill in the hard copy by hand.
“The information you collect is yours to use however you like,” Murray said. “You can give it to other family members. We hope you'll consider sharing it with your health care providers.” Although you fill out a medical history form with your primary care practitioner, Murray said time constraints often limit the scope of that information.
Throughout the project, participants will have access to a genetic counselor or medical geneticist for confidential advice and guidance about health risks that may run in their families. BWH employees also have an opportunity to share this project with others outside the hospital. “This tool isn't limited to the BWH family,” said Morton. “You can all be advocates for health care in your families, communities and neighborhoods by spreading the word.”
BWH President Gary Gottlieb looks forward to recording his own medical family tree. “This is a seminal event,” he said. “As a hospital and as health care professionals, we know genetics is at the precipice of changing the way we provide care. As an employer, we have the unique opportunity to make sure our employees are poised to take advantage of that change.”