US Surgeon General urges Americans to know their family health history

November 15, 2005

WASHINGTON - Tues., Nov. 15, 2005 - Calling on all Americans to "know their family history," U.S. Surgeon General Richard H. Carmona, M.D., M.P.H., today unveiled an updated version of a computerized tool designed to help families gather their health information, and praised Brigham and Women's Hospital in Boston for joining in to expand the Surgeon General's Family Health Initiative.

"This Thanksgiving marks the second annual National Family History Day. I encourage all families to take time on this day - or at any other family gathering throughout the year - to collect important health history information that can benefit all family members," Dr. Carmona said. "Even with all the high-tech tests, medicines and procedures available in today's modern health-care setting, family health history remains the cornerstone of our efforts to prevent disease and promote personal health. It's clear that knowing your family history can save your life."

Dr. Carmona released an updated, Web-based version of a free, computerized tool that organizes family health information into a printout that people can take to health-care professionals to help determine whether they are at higher risk for disease. The tool, called "My Family Health Portrait," is available at www.hhs.gov/familyhistory.

Health-care professionals have known for a long time that many diseases, such as cancer, diabetes and heart disease, can run in families. A detailed family history can predict the disorders for which a person may be at increased risk, and thereby help to develop more personalized action plans. However, as numerous pressures decrease the amount of time that doctors and nurses spend with their patients, it has become increasingly difficult to gather enough family information to make useful predictions. The "My Family Health Portrait" tool is intended to make that process easier and more efficient for both patients and health-care professionals.

Dr. Carmona urged families and employers in all parts of the country to follow the lead of Brigham and Women's Hospital, which held a press conference in Boston today to launch its effort to support and evaluate the voluntary use of the Surgeon General's "My Family Health Portrait" tool among its more than 12,000 employees. The workforce of the 735-bed hospital includes physicians, nurses, administrative, service and management staff.

"Not only is Brigham and Women's a nationally recognized hospital and major academic medical center, it, like many hospitals, is a major employer in its community. I commend Brigham and Women's for recognizing that collecting a family history can improve the health of their employees, as well as the health of the employee's family members living throughout the community," said Elias A. Zerhouni, M.D., director of the National Institutes of Health (NIH), which is a partner in the U.S. Surgeon General's Family History Initiative.

In the past year, more than 360,000 copies of the original "My Family Health Portrait" computer tool, which is available in English and in Spanish, have been downloaded from the HHS Web site. In addition, more than 85,000 print copies of the tool have been distributed nationwide.

"Building on the foundation laid by the Human Genome Project, we have made tremendous strides towards developing ways to identify and quickly test for the glitches that we all carry in our genes. But we aren't there yet. So, the best thing each of us can do right now to help our health-care providers develop a personalized disease prevention plan is to gather a family health history," said Francis S. Collins, M.D., Ph.D., director of the National Human Genome Research Institute (NHGRI), part of the NIH.

To expand the initiative's reach and impact, NHGRI's Education and Community Involvement Branch this year sought proposals for a demonstration project to educate and engage a health-care community about the importance of family history. NHGRI selected the Brigham and Women's Hospital proposal from all the applications for the one-year project, which will be supported by $99,000 in NHGRI funds that are being matched by $99,000 from the hospital.

"Brigham and Women's Hospital is proud to serve as the country's first institution to participate in the U.S. Surgeon General's Family Health Initiative," said Gary Gottlieb, M.D. M.B.A., president of Brigham and Women's Hospital. "Our more than 12,000 employees are a direct reflection of the vibrant and multicultural community we are here to serve. As such, we are eager to set an example of how individuals, empowered to share their family medical histories with their own health-care providers, can help shape our country's future understanding and treatment of disease."

Dr. Gottlieb emphasized that employee participation in the family history project will be entirely voluntary. Also, prior to deciding about whether to take part, they will be provided with extensive educational materials and support.

"We hope to apply what we learn among employees to our patients and, ultimately, develop a model that can be used in other hospitals and health-care institutions across the nation. Our effort will identify obstacles to participation, as well as gather feedback from those who choose to use the tool," said Cynthia C. Morton, Ph.D., director of the hospital's Cytogenetics Laboratory under whose leadership the demonstration project was initiated.

In addition to the Brigham and Women's effort, the U.S. Centers for Disease Control and Prevention's (CDC's) Office of Genomic and Disease Prevention has, on behalf of the U.S. Surgeon General, recently distributed packets of family history resource materials to chronic disease and genetic experts in the state health departments of every U.S. state and territory. These materials are designed to assist local health departments in their efforts to educate people about the importance of collecting a family health history, and to inform them about the new computerized tool that makes that process easier.

Specifically, the "My Family Health Portrait" tool guides users through a series of screens that helps them compile information about six common diseases for each of their family members, as well as enter information about any other conditions not on the list that are of particular interest to the family. The tool focuses on six common diseases because a genetic contribution is known for each, and because a preventive strategy can be developed to avoid illnesses. The tool creates a graphic printout that organizes the information into a diagram or a chart that can be given to a health-care professional to better individualize diagnosis, treatment and prevention plans. The tool allows users to go back and add information as it becomes available and does not require complete information about every family member.

The new version of the "My Family Health Portrait" tool is Web-based, which allows it to be operated on all computers with Internet access running any of several standard browsers, regardless of the computer's operating system. All personal information entered into the program resides on the user's computer only. No information is available to the federal government or any other agency.

The new version also has the added feature of allowing users to reconfigure family health information to shift the focus from the person entering the information to other family members. This enables users to produce personalized diagrams or charts for all of their family members, who then can share the information with their health-care providers. Another new feature is the ability for users to highlight certain diseases, such as heart disease or diabetes, on their family health diagram or chart.

In addition to the features that enhance customization of family health information, the updated version provides users with more background information on health conditions and includes more relevant details to assist health-care providers, such as a patient's height, weight and calculated body mass index (BMI).

Users also will still have the option to download the original "My Family Health Portrait" software and install it on their computers if they have the Windows operating system. As is the case with the new, Web-based version of the tool, all personal information will reside on the user's computer only.
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Free, print versions of the tool are also available at the Health Resources and Services Administration's (HRSA's) Information Center at 1-888-Ask HRSA (275-4772). Callers should ask for "My Family Health Portrait" in English (inventory # HRS00360) or Spanish (inventory # HRS00361).

Department of Health and Human Service agencies that are partnering with the U.S. Surgeon General in the family history public health campaign are NIH-NHGRI, CDC, HRSA and the Agency for Healthcare Research and Quality (AHRQ).

For additional information about the U.S. Surgeon General's Family History initiative, please visit www.hhs.gov/familyhistory.

NIH/National Human Genome Research Institute

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