[Federal Register Volume 74, Number 130 (Thursday, July 9, 2009)]
[Notices]
[Pages 32948-32949]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: E9-16191]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

National Institutes of Health


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.

[[Page 32949]]

    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 [email protected]. 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.
[FR Doc. E9-16191 Filed 7-8-09; 8:45 am]
BILLING CODE 4140-01-P