The use of family health histories has had important roles over the years in the practice of medicine—promoting positive patient lifestyle changes, increasing individual empowerment, or influencing clinical interventions.
However, a National Institutes of Health (NIH) State-of-the-Science consensus panel this week found that it is "unclear how this information can be effectively gathered" and used in primary care settings for assisting with common chronic conditions, such as diabetes or asthma.
"When you look closely at family history, you find that there's a lot we don't know about it," said the conference chairperson, Alfred Berg, MD, MPH, who is a professor at the University of Washington Department of Family Medicine in Seattle. "The term is common use, but it really doesn't have a common definition. Clinicians and patients understand it in different way."
hile family history questionnaires often are not standardized, they still may cover a wide variety of factors. "The questions may be imbedded in complex risk assessment tools, along with other demographic and health factors," Berg said at a telebriefing. "We don't know much about its accuracy. We don't know much about the potential usefulness—about disease prediction and...being used as a basis for intervention."
For two days this week, the 16-member panel looked at studies and heard from experts about topics including key elements of family histories in a primary care setting for the purposes of risk assessment for common diseases, if family histories will improve health outcomes for the patient and/or families, and if family histories could result in adverse outcomes for patients or their families.
The evidence review focused on ability of family history to accurately identify and predict outcomes for certain kinds of common chronic diseases. "For the most part, we found the evidence supportive but of insufficient quality to be able to tell how accurate and how useful it would be to actually change clinical outcomes," Berg said.
Berg emphasized that the panel's findings are not directed at consumers. "Consumers have an interest in family history—they're often asked about it when they see clinicians. If they are asked about the information, it's certainly is in their interest to make sure the information is accurate and complete," Berg said. "But the evidence review is not constructed in a way to make recommendations to change consumer behavior about family history."
Berg added that "a lot of interesting possibilities" exist about how a family history can be integrated into health system records and how that "might make it possible for individuals to do a much better job about managing some of the lifestyle issues that might be implicated by genetic susceptibility." However, he said, "those issues were simply not addressed by the review."
The panel noted that additional research will be needed to understand how the routine collection of family history will lead to improved health outcomes. To help address these gaps, the panel outlined several research recommendations in three categories: The family health information to be collected, the optimal way to collect and use it, and the outcomes of this tool for diagnosis and engagement with individuals and family members.
Berg emphasizes that family histories still should be a part of primary practice, "but the evidence review itself doesn't really change the approach that we're going to be taking."
The panel's statement is an independent report and is not a policy statement of the NIH or the federal government. The conference was sponsored by NIH's Office of Medical Applications of Research and the National Human Genome Research Institute.