E9-16191. NIH State-of-the-Science Conference: Family History and Improving Health; Notice

Notice is hereby given of the National Institutes of Health (NIH) “NIH State-of-the-Science Conference: Family History and Improving Health” to be held August 24-26, 2009, in the NIH Natcher Conference Center, 45 Center Drive, Bethesda, Maryland 20892. The conference will begin at 8:30 a.m. on August 24 and 25, at 9 a.m. on August 26, and will be open to the public.

Many common diseases have genetic, environmental, and lifestyle causes that family members may share. An individual's family health history captures information about shared factors that contribute to that individual's risk for developing diseases such as diabetes, stroke, cancer, and heart disease. Family health history information collected from patients has long been used as a risk assessment tool by health care providers in the United States. Family history is also critical to determining who will benefit from genetic testing for both common and rare conditions and can facilitate interpretation of genetic test results. The combination of these attributes makes the collection of family history an important first step in personalized medicine.

Recently there have been a number of national efforts to ensure that family history information is effectively incorporated into health information technology systems, including electronic health records and personal health record systems. An ultimate goal of these efforts will be to provide clinicians with automated clinical decision tools based on family history information; this will require a sound scientific foundation on which to develop such tools.

Although most individuals are accustomed to providing some form of family history information when they visit health professionals, there is wide variation in the way family history is collected and used by health care providers. Moreover, the accuracy of a patient-gathered history may be limited by an individual's awareness, understanding, and recollection of his or her family members' health issues. Important questions remain regarding the effectiveness of family history information for disease prediction and improvement of patient health outcomes.

There may also be adverse effects for both individuals and society, thus far not fully understood, of depending too heavily on a family history to assess disease risk. It is possible that emphasizing family history may have economic costs as well, as limited resources are allocated across a wide variety of health promotion activities in the primary care setting.

In order to take a closer look at this important topic, the National Human Genome Research Institute and the Office of Medical Applications of Research of the National Institutes of Health will convene a State-of-the-Science conference from August 24 to 26, 2009, to assess the available scientific evidence related to the following questions:

• What are the key elements of a family history in a primary care setting for the purposes of risk assessment for common diseases?
• What is the accuracy of the family history, and under what conditions does the accuracy vary?
• What is the direct evidence that getting a family history will improve health outcomes for the patient and/or family?
• What is the direct evidence that getting a family history will result in adverse outcomes for the patient and/or family?
• What are the factors that encourage or discourage obtaining and using a family history?
• What are future research directions for assessing the value of family history for common diseases in the primary care setting?

An impartial, independent panel will be charged with reviewing the available published literature in advance of the conference, including a systematic literature review commissioned through the Agency for Healthcare Research and Quality. The first day and a half of the conference will consist of presentations by expert researchers and practitioners and open public discussions. On Wednesday, August 26, the panel will present a statement of its collective assessment of the evidence to answer each of the questions above. The panel will also hold a press conference to address questions from the media. The draft statement will be published online later that day, and the final version will be released approximately six weeks later. The primary sponsors of this meeting are the NIH National Human Genome Research Institute and the NIH Office of Medical Applications of Research.

Advance information about the conference and conference registration materials may be obtained from American Institutes for Research of Silver Spring, Maryland, by calling 888-644-2667, or by sending e-mail to [e-mail]. American Institutes for Research's mailing address is 10720 Columbia Pike, Silver Spring, MD 20901. Registration information is also available on the NIH Consensus Development Program Web site at http://consensus.nih.gov.

Please Note:

The NIH has instituted security measures to ensure the safety of NIH employees, property, and guests. All visitors must be prepared to show a photo ID upon request. Visitors may be required to pass through a metal detector and have bags, backpacks, or purses inspected or x-rayed as they enter NIH buildings. For more information about the security measures at NIH, please visit the Web site at http://www.nih.gov/​about/​visitorsecurity.htm.

Dated: June 30, 2009.

Lawrence A. Tabak,

Acting Deputy Director, National Institutes of Health.