NHGRI Workshop on Privacy, Confidentiality and Identifiability in Genomic Research Workshop

NHGRI Workshop on Privacy, Confidentiality and Identifiability in Genomic Research Workshop

Participants

October 3-4, 2006

Solome Abebe, M.S.
Scientific Program Analyst
National Human Genome Research Institute

Joan E. Bailey-Wilson, Ph.D.
Co-Chief, Inherited Disease Research Branch
National Human Genome Research Institute

Leslie Biesecker, M.D. Senior Investigator
National Human Genome Research Institute

Eric Boerwinkle, Ph.D.
Director, Human Genetics Center
University of Texas Health Science Center at Houston

Vence Bonham, J.D.
Office of the General Counsel
National Institutes of Health

Lisa Brooks, Ph.D.
Program Director
National Human Genome Research Institute

John M. Butler, Ph.D.
Human Identity Project Leader
National Institute of Standards and Technology

Tara Camm, LL.B/LL.M.
Principal Solicitor
The Wellcome Trust

Francis S. Collins, M.D., Ph.D.
Director
National Human Genome Research Institute

Spike Duzor
Chair, Privacy Board
Centers for Medicare and Medicaid Services

Adam Felsenfeld, Ph.D.
Program Director
National Human Genome Research Institute

Alan R. Fleischman, M.D.
Chair, Federal Advisory Committee, and Ethics Advisor
The National Children's Study
National Institute of Child Health and Human Development

Kelly Frazer, Ph.D.
Vice President of Genomic Biology
Perlegen Sciences, Inc.

Phyllis Frosst, Ph.D.
Science Policy Analyst
National Human Genome Research Institute

Barbara Fuller, J.D.
Assistant Director for Ethics
National Human Genome Research Institute

John Gallacher, Ph.D.
Professor in Environmental Epidemiology
Statistics and Public Health Centre for Health Science Research
Cardiff University

Valery M. Gordon, Ph.D., M.P.H.
Extramural Human Subjects Research Policy Officer
Extramural Research Integrity Liaison Officer
Office of Extramural Programs
National Institutes of Health

Alan E. Guttmacher, M.D.
Deputy Director
National Human Genome Research Institute

Mark Guyer, Ph.D.
Director, Division of Extramural Research
National Human Genome Research Institute

Marta Gwinn, M.D., MPH
Associate Director for Science
National Office of Public Health Genomics
Centers for Disease Control and Prevention

Katrina Gwinn-Hardy, M.D.
Program Director
National Institute of Neurological Disorders and Stroke

Emily L. Harris, Ph.D., MPH
Epidemiologist
National Human Genome Research Institute

Jennifer Harris, Ph.D.
The Norwegian Institute of Public Health, Oslo,
and Consultant to the National Institute on Aging
National Institute on Aging

Robert N. Hoover, M.D., Sc.D.
Director, Epidemiology and Biostatistics Program
Division of Cancer Epidemiology and Genetics
National Cancer Institute

Barbara R. Jasny, Ph.D.
Deputy Editor for Commentary
Science/AAAS

Eva Kakoza
Program Assistant
National Human Genome Research Institute

Jay J. Lander, LLB
Friends of the Framingham Heart Study

Zhen Lin, Ph.D., MS, RN
Research Assistant Professor
University of North Carolina at Chapel Hill
School of Nursing/Carolina Center for Genome Sciences

Catherine Lorraine, J.D.
Director, Policy Development and Coordination
Office of Policy, Food and Drug Administration

William W. Lowrance, Ph.D.
Consultant in Health Research Policy

Teri Manolio, M.D., Ph.D.
Senior Advisor to the Director for Population Genomics
National Human Genome Research Institute

Barbara McGarey, J.D.
Legal Advisor
Office of the General Counsel
National Institutes of Health

Jean E. McEwen, J.D., Ph.D.
Program Director
Ethical, Legal, and Social Implications Program
National Human Genome Research Institute

Amy L. McGuire, J.D., Ph.D.
Assistant Professor of Medicine
Center for Medical Ethics and Health Policy
Baylor College of Medicine

Shirley Miller, B.B.A.
Manager, Advocacy/Community Relations
Southwestern Comprehensive Sickle Cell Center
Children's Medical Center, Dallas

Richard M. Myers, Ph.D.
Professor and Chair, Department of Genetics
Director, Stanford Human Genome Center
Stanford University School of Medicine

Christopher J. O'Donnell, M.D., MPH
Senior Advisor to the Director for Genome Research
Associate Director, NHLBI's Framingham Heart Study
Scientific Director, Framingham SHARe Project
National Heart, Lung and Blood Institute

Jim Ostell, Ph.D.
Chief, Information Engineering Branch
National Center for Biotechnology Information
Baltimore, MD 21201

Brad Ozenberger, Ph.D.
Program Director
National Human Genome Research Institute

Amy P. Patterson, M.D.
Director, Office of Biotechnology Activities
Clinical Research Policy Analysis and Coordination Program
Office of the Director, National Institutes of Health

Jonathan D. Pollock, Ph.D.
Chief, Genetics and Molecular Neurobiology Research Branch
National Institute on Drug Abuse

M.K. Holohan Quattrocchi, J.D.
Health Policy Analyst
National Human Genome Research Institute

Rebekah Rasooly, Ph.D.
Program Director
National Institute of Diabetes and Digestive and Kidney Diseases

Laura Lyman Rodriguez, Ph.D.
Special Advisor to the Director
National Human Genome Research Institute

Charmaine Royal, Ph.D.
Assistant Professor and Director
GenEthics Unit
National Human Genome Center at Howard University

Jim Scanlon
Deputy Assistant Secretary for Planning and
Evaluation (Science and Data Policy)
Office of the Assistant Secretary for Planning
and Evaluation, HHS

Stephen Sherry, Ph.D.
Staff Scientist
National Center for Biotechnology Information
National Library of Medicine

David Shore, M.D.
Acting Director, Division of Services and
Intervention Research
National Institute of Mental Health

Susan B. Shurin, M.D.
Deputy Director
National Heart, Lung, and Blood Institute

Larry Thompson
Chief, Communications and Public Liaison Branch
National Human Genome Research Institute

Elizabeth Thomson, R.N., M.S., D.N.Sc., C.G.C., F.A.A.N.
Program Director
Ethical, Legal, and Social Implications Research
National Human Genome Research Institute

Susan Vasquez
Special Assistant to the Deputy Director
National Human Genome Research Institute

David Wholley
Director, Genetic Association Information Network (GAIN)
Foundation for the National Institutes of Health

Alvan O. Zarate, Ph.D.
Confidentiality Officer
National Center for Health Statistics