NIH Family History and Improving Health Conference

Family History and Improving Health conference artwork

NIH State-of-the-Science Conference:
Family History and
Improving Health

August 24-26, 2009
Bethesda, Maryland

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Sponsors

National Human Genome Research Institute
Office of Medical Applications of Research

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

Partners

Centers for Disease Control and Prevention
Health Resources and Services 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
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 Brenda Wilson, M.B.Ch.B, M.Sc., M.R.C.P. (UK), F.F.P.H. Associate Professor Department of Epidemiology and Community Medicine University of Ottawa
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
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 for the Accuracy of Self-Reporting Family History Across Different Diseases P. Lina Santaguida, Ph.D. Assistant Professor Department of Clinical Epidemiology and Biostatistics Associate Director McMaster University Evidence-based Practice Center
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
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 Nadeem Qureshi, M.S., D.M., M.Sc. Clinical Associate Professor in Primary Care Division of Primary Care School of Graduate Entry Medicine and Health University of Nottingham Derby City General Hospital
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

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
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 Healthcare: 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

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