NIH State-of-the-Science Conference: Family History and Improving Health August 24-26, 2009 Bethesda, Maryland   Online Registration New! CME Info Can't Attend? Background Sponsors Agenda Get involved! Background 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 their 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? At the conference, invited experts will present information pertinent to these questions, and a systematic literature review prepared under contract with the Agency for Healthcare Research and Quality (AHRQ) will be summarized. Conference attendees will have ample time to ask questions and provide statements during open discussion periods. After weighing the scientific evidence, an unbiased, independent panel will prepare and present a consensus statement addressing the key conference questions. Sponsors               National Human Genome Research Institute (NHGRI) Office of Medical Applications of Research (OMAR) of the National Institutes of Health (NIH) & The Johns Hopkins University School of Medicine, Educational Provider Co-Sponsors                                                                Eunice Kennedy Shriver National Institute of Child Health and Human Development National Cancer Institute National Heart, Lung, and Blood Institute National Institute of Alcohol Abuse and Alcoholism National Institute on Drug Abuse National Institute of Mental Health National Institute of Nursing Research National Library of Medicine Office of Rare Diseases Research & Office of Research on Women's Health of the National Institutes of Health Partners                  Centers for Disease Control and Prevention Maternal and Child Health Bureau, Health Resources and Service Administration & Office of the Surgeon General The Agency for Healthcare Research and Quality provided additional conference development support. Special Thanks   NIH Library Agenda Monday, August 24, 2009 8:30 a.m.      Introduction                      Alan Edward Guttmacher, M.D.                      Acting Director                      National Human Genome Research Institute                      National Institutes of Health   8:35 a.m.      Opening Remarks W. Gregory Feero, M.D., Ph.D. Senior Advisor for Genomic Medicine National Human Genome Research Institute National Institutes of Health   8:40 a.m.      Charge to the Panel Jennifer Miller Croswell, M.D. Acting Director Office of Medical Applications of Research Office of the Director National Institutes of Health 8:50 a.m.      Conference Overview and Panel Activities Alfred O. Berg, M.D., M.P.H. Panel and Conference Chairperson Professor and Chair Department of Family Medicine University of Washington 9:00 a.m.      Family History, Personalized Medicine, Primary Care and Improved Health Muin Khoury, M.D., Ph.D. Director National Office of Public Health Genomics Centers for Disease Control and Prevention   I.        What Are the Key Elements of a Family History in a Primary Care Setting for the Purposes of Risk Assessment for Common Diseases? 9:20 a.m.      Evidence-Based Practice Center Presentation I: A Summary of the Evidence of Family History as a Determinant of Risk for Common Disorders Affecting Pediatric and Adult Populations EPC Speaker 9:40 a.m.      Discussion 10:00 a.m.    Family History as a Determinant of Risk for Chronic Disorders: Common Conditions and Beyond: I Maren T. Scheuner, M.D., M.P.H., FACMG Natural Scientist RAND Corporation 10:20 a.m.    Family History as a Determinant of Risk for Chronic Disorders: Common Conditions and Beyond: II Paula Yoon, Sc.D., M.P.H. Division for Heart Disease and Stroke Prevention Centers for Disease Control and Prevention 10:40 a.m.    Research Challenges in Assessing Risk With Family History Louise S. Acheson, M.D., M.S. Professor Department of Family Medicine Case Western Reserve University 11:00 a.m.    Discussion   II.        What Is the Accuracy of the Family History, and Under What Conditions Does the Accuracy Vary? 11:30 a.m.    Evidence-Based Practice Center Presentation II: A Summary of the Evidence of the Accuracy of Family History Information for Risk Assessment in the Care of Children and Adults EPC Speaker 11:50 a.m.    Accuracy of Family History Information for Risk Assessment in Clinical Care Harvey J. Murff, M.D., M.P.H. Assistant Professor in Medicine Institute for Medicine and Public Health Vanderbilt University 12:10 p.m.    Discussion 12:30 p.m.    Lunch   III.      What Is the Direct Evidence That Getting a Family History Will Improve Health Outcomes for the Patient and/or Family? 1:30 p.m.      Evidence-Based Practice Center Presentation III: Does the Use of Family History as a Screening Tool in Primary Care Settings Improve Health Outcomes? A Synthesis of the Evidence EPC Speaker 1:50 p.m.      Perspectives on the Utility of Family History as a Screening Tool: The CDC Family Healthcare Experience Wendy S. Rubinstein, M.D., Ph.D., FACMG Medical Director Center for Medical Genetics Evanston Northwestern Healthcare 2:10 p.m.      Perspectives on the Utility of Family History as a Screening Tool: The Utah State Experience Ted Adams, Ph.D., M.P.H. Cardiovascular Genetics Research Program University of Utah 2:30 p.m.      Discussion 3:00 p.m.      Perspectives on the Utility of Family History as a Screening Tool in Pediatric Populations Ridgely Fisk Green, Ph.D., M.S.C. National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention 3:20 p.m.      Research Challenges in Demonstrating the Utility of Family History in Obstetrical and Pediatric Settings Siobhan Dolan, M.D., M.P.H. Associate Professor, Obstetrics and Gynecology Albert Einstein College of Medicine Montefiore Medical Center 3:40 p.m.      Family History and Those Providing Care for Patients With Genetic Disorders: The Customer’s Perspective Sharon Terry, M.A. President and CEO Genetic Alliance 4:00 p.m.      Research Challenges in Affecting Behavioral Change With Family History Information: Patients and Providers Colleen McBride, Ph.D. Chief, Social and Behavioral Research Branch National Human Genome Research Institute National Institutes of Health 4:20 p.m.      Discussion 5:00 p.m.      Adjournment Tuesday, August 25, 2009 IV.      What Is the Direct Evidence That Getting a Family History Will Result in Adverse Outcomes for the Patient and/or Family? 8:30 a.m.      The Potential Costs of Screening for Risk With Family History James Haddow, M.D. Professor (Research) Pathology and Laboratory Medicine Womens and Infants Hospital of Rhode Island 8:50 a.m.      Perspectives on the Clinical Applications of Family History as a Screening Tool Across Multiple Populations Chanita Hughes-Halbert, Ph.D. Assistant Professor of Psychiatry Director, Community and Minority Cancer Control Program University of Pennsylvania 9:10 a.m.      Research Challenges in Assessing the Economic Costs of Using Family History as a Screening Tool in Primary Care Scott D. Ramsey, M.D., Ph.D. Associate Professor of Medicine and Health Services Associate Member, Cancer Prevention Research Program Division of General Internal Medicine Fred Hutchinson Cancer Research Center 9:30 a.m.      Discussion   V.       What Are the Factors That Encourage or Discourage Obtaining and Using a Family History? 10:00 a.m.    A Summary of the Use of Family History in Primary Care From Across the Pond(s) Jon Emery, D.Phil., FRACGP Department of General Practice University of Western Australia 10:20 a.m.    Family History and Health Care: The Experience of the National Council of La Raza Liany E. Arroyo, M.P.H. Director, Institute for Hispanic Health National Council of La Raza 10:40 a.m.    Health IT – Based Strategies For Studying The Use Of Family History In Primary Care Kevin S. Hughes, M.D., F.A.C.S. Surgical Director, Breast Screening Co-Director, Avon Comprehensive Breast Evaluation Center Massachusetts General Hospital 11:00 a.m.    Reconsidering the Use of Family History in Primary Care Revisited Eugene C. Rich, M.D., F.A.C.P. Director Center for Practice Improvement and Outcomes Research Department of Medicine School of Medicine Creighton University 11:20 a.m.    Discussion 12:00 p.m.    Adjournment Wednesday, August 26, 2009 9:00 a.m.      Presentation of the Draft State-of-the-Science Statement 9:30 a.m.      Public Discussion 11:00 a.m.     Adjournment   Panel Meets in Executive Session 2:00 p.m.      Press Telebriefing Back to top

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