|Panel Assesses Evidence for the Collection and Use of Family Health History Information
Though most Americans are familiar with completing a questionnaire about their
family health history when visiting health care providers, an independent
panel was convened by the National Institutes of Health this week
to critically assess exactly what we know and what we need to learn
about how this process relates to improving health. The conference
focused on the use of family history in the primary care setting
for common diseases such as diabetes, stroke, cancer, and heart
disease. Earlier today, the panel released their findings in a
statement that is available at http://consensus.nih.gov.
Reporting a positive history of a family disease or condition to a health care
provider could prompt a range of next steps, from lifestyle changes
including diet and exercise to referral to genetic services or
other specialists. The panel perceived a need to approach their
assessment from a balanced perspective, appreciating the potential
for both benefits and harms of obtaining and acting upon family
history information. Their statement recognized the longstanding
use and intuitive appeal of this relatively simple and noninvasive
tool to try to improve health outcomes for at-risk individuals.
The collection of a family history may also foster productive relationships
between individuals and their clinicians. At the same time, theoretical
harms, such as overtreatment and patient anxiety, should be taken
into account. The panel's findings and recommendations were aimed primarily at the research and health professional communities, rather than the public at large, and intended to inform the research agenda rather than influence current clinical practice.
"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. "Additionally, increased emphasis on personalized medicine and electronic health records creates a fascinating opportunity to maximize the value of this information responsibly."
The panel recognized that family history has an important role in the practice of medicine and may motivate positive lifestyle changes, enhance individual empowerment, and influence clinical interventions. The panel found that it is unclear how this information can be effectively gathered and used in the primary care setting for common diseases. Additional research is 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.
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 complete updated draft state-of-the-science statement will be available later today at http://consensus.nih.gov. The conference was sponsored by the NIH Office of Medical Applications of Research and the National Human Genome Research Institute along with other NIH and Department of Health and Human Services components. This conference was conducted under the NIH Consensus Development Program, which convenes conferences to assess the available scientific evidence and develop objective statements on controversial medical issues.
The 16-member conference panel included experts in the fields of family medicine, population health, pediatrics, obstetrics and gynecology, health economics, epidemiology, biostatistics, genetic counseling, medical genetics, nursing, health informatics, endocrinology, behavioral science, ethics, health services and outcomes research, and a public representative. A complete listing of the panel members and their institutional affiliations is included in the draft conference statement. Additional materials, including panel bios, photos, and other related resources, are available at http://consensus.nih.gov/familyhistorymedia.htm. Interviews with panel members can be arranged by contacting Kelli Marciel at 301-496-4819 or Kelli.Marciel@nih.gov.
In addition to the material presented at the conference by speakers and the comments of conference participants presented during discussion periods, the panel considered pertinent research from the published literature and the results of a systematic review of the literature. The systematic review was prepared through the Agency for Healthcare Research and Quality Evidence-based Practice Centers (EPC) program, by the McMaster University Evidence-based Practice Center. The EPCs develop evidence reports and technology assessments based on rigorous, comprehensive syntheses and analyses of the scientific literature, emphasizing explicit and detailed documentation of methods, rationale, and assumptions. The evidence report on family history and improving health is available at http://www.ahrq.gov/clinic/tp/famhimptp.htm.
The panel's statement is an independent report and is not a policy statement of the NIH or the federal government. The NIH Consensus Development Program was established in 1977 as a mechanism to judge controversial topics in medicine and public health in an unbiased, impartial manner. NIH has conducted 119 consensus development conferences, and 30 state-of-the-science (formerly "technology assessment") conferences, addressing a wide range of issues. A backgrounder on the NIH Consensus Development Program process is available at http://consensus.nih.gov/backgrounder.htm.
The Office of the Director, the central office at NIH, is responsible for setting policy for NIH, which includes 27 Institutes and Centers. This involves planning, managing, and coordinating the programs and activities of all NIH components. The Office of the Director also includes program offices which are responsible for stimulating specific areas of research throughout NIH. Additional information is available at http://www.nih.gov/icd/od.
The National Institutes of Health (NIH) — The Nation's
Medical Research Agency — includes 27 Institutes and
Centers and is a component of the U.S. Department of Health and
Human Services. It is the primary federal agency for conducting
and supporting basic, clinical and translational medical research,
and it investigates the causes, treatments, and cures for both
common and rare diseases. For more information about NIH and
its programs, visit www.nih.gov.