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NIH Independent Panel Assesses Collection and Use of Family Health History

by Astrid Fiano, DOTmed News Writer | September 02, 2009
Does collecting information
on family history help?
NIH wants to know
The National Institute of Health (NIH) recently convened an independent panel to critically assess what the health care industry knows and needs to know regarding how collecting family health history relates to improving health. According to a press release on the NIH website, the State of the Science conference panel focused on family history in a primary care setting for diseases including diabetes, stroke, cancer and heart disease. The panel has released a statement on their review, Family History and Improving Health.

The questions for review were:
-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?

The panel's findings and recommendations are directed to the research and health professional communities, to inform the research agenda rather than change current clinical practice.

The panel's findings indicated that reports of family history to a health care provider could prompt next steps including lifestyle changes, diet and exercise, or referrals to genetic services or other specialists. A balanced perspective is needed, however, the panel determined. There must be appreciation for the benefits and harms of collecting and using family history information. At the same time the tool is appealing as one to improve health outcomes for at-risk individuals. The collection of a family histories might be conducive to better relationships between individuals and their clinicians, while theoretical harms including overtreatment and patient anxiety, need to be considered.

"Given the unprecedented proliferation of genomic information, it is imperative to clarify the role of family history in improving health," said Panel Chair Dr. Alfred O. Berg, a Professor in the Department of Family Medicine at the University of Washington, Seattle, in the press release. "Additionally, increased emphasis on personalized medicine and electronic health records creates a fascinating opportunity to maximize the value of this information responsibly."

The panel found additional research is needed to understand how routine collection of family history will lead in fact to improved health outcomes. For this issue, the panel outlined several research recommendations, such as the family health information to be collected, optimal ways to collect and use information, and the outcomes of the tool for diagnosis and communication with individuals and family members.

Individuals interested in recording their family's health history can visit http://www.hhs.gov/familyhistory, a tool provided by the Office of the Surgeon General.

The panel's statement is available at: http://consensus.nih.gov/2009/familyhistorystatement.htm

Adapted from a press release by the NIH.