Personalizing Prevention: The U.S. Surgeon General’s Family History Initiative
Am Fam Physician. 2005 Jan 1;71(1):36-39.
An immense gap exists between what American families know about health and what they need to know. Chronic diseases currently account for seven out of 10 deaths in the United States. Although all of these diseases have hereditary factors, most can be prevented with relatively simple steps: healthy eating, being physically active, and not smoking.
Many families share different susceptibilities to disease; persons with a family history of coronary artery disease, for example, are more likely to have an acute myocardial infarction a decade earlier than those without such a history.1 Although healthy behaviors can benefit everyone, persons at increased risk for disease may benefit from targeted health promotion strategies.
The Human Genome Project has helped identify genetic variations that contribute to the risk for common diseases.2 These diseases most often are caused by a combination of genetic, environmental, and lifestyle factors. Because one’s genetic predisposition to certain diseases cannot be changed, lifestyle choices and preventive measures must be directed specifically to persons who carry the preponderance of risk. Family history is a broad indicator of genetic variation associated with disease and may serve as a proxy for laboratory-based testing. In fact, DNA testing is indicated only when the family history is strong, the responsible genes are identified, and an intervention is available. Evidence-based guidelines for screening and management of common diseases often use family history information as a nodal point for changing the clinical intervention.3
Regrettably, the family history is underused.4,5 Patients often are unaware of their relatives’ health information. In a survey6 conducted in November 2004, 96 percent of respondents felt that knowledge of family health history was somewhat or very important, yet only 30 percent had collected health information from their relatives. Cultural factors and patients’ educational levels may be barriers to obtaining a complete and accurate health history. In addition, short office visits, a focus on acute care, inaccuracies in patient recall, and the absence of reimbursement make family history collection in the medical office challenging.
To “personalize” disease-prevention efforts, our patients must be able to collect accurate health histories from family members and record relevant information in a standardized format that health professionals can use to guide education, screening, and disease management. This process will establish a foundation for preventive medicine by highlighting diseases that have occurred in the patient’s family and revealing nonmodifiable and modifiable risk factors.
To achieve these goals, the Office of the Surgeon General, in conjunction with the National Institutes of Health, the Centers for Disease Control and Prevention, the Health Resources and Services Administration, and the Agency for Healthcare Research and Quality, launched the U.S. Surgeon General’s Family History Initiative in November 2004. Thanksgiving Day was chosen as “National Family History Day,” taking advantage of the time that many American families gather together.
Information about ways to collect a family history, as well as information that helps health professionals encourage the collection of a family history, is available at http://www.hhs.gov/familyhistory.
The cornerstone of this initiative is a free, computer-based tool, available in both English and Spanish, called “My Family Health Portrait,” which can be downloaded securely so that no information is collected or recorded on the Web site. The tool includes questions to ask relatives and instructions for entering the information. Although this campaign ultimately will encompass many diseases, the initial focus currently is on heart disease; diabetes; stroke; and breast, ovarian, and colon cancers. In addition, there are two open entries for other diseases specific to a given family. The result is a standardized family history that patients can print and take to their physicians.
We think this initiative is an important step in allowing the family physician to focus on disease prevention rather than treatment, thus helping more Americans to live longer, healthier, happier lives.
1. Harpaz D, Behar S, Rozenman Y, Boyko V, Gottlieb S. Family history of coronary artery disease and prognosis after first acute myocardial infarction in a national survey. Cardiology. 2004;102:140–6.
2. Collins FS, Guttmacher AE, Drazen JM. Genomic medicine: articles from the New England Journal of Medicine. Baltimore: Johns Hopkins University Press, 2004.
3. National Guideline Clearinghouse. Rockville, Md.: Agency for Healthcare Research and Quality, 2004. Accessed online December 1, 2004, at:http://www.guideline.gov.
4. Sifri RD, Wender R, Paynter N. Cancer risk assessment from family history: gaps in primary care practice. J Fam Pract. 2002;51:856
5. Frezzo TM, Rubinstein WS, Dunham D, Ormond KE. The genetic family history as a risk assessment tool in internal medicine. Genet Med. 2003;5:84–91.
6. Yoon PW, Scheuner MT, Gwinn M, Khoury MJ. Awareness of family health history as a risk factor for disease—United States, 2004. MMWR Morb Mortal Wkly Rep. 2004;53:1044–7.
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