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Suggested Citation:"Appendix D: Registered Attendees." Institute of Medicine. 2014. Assessing Genomic Sequencing Information for Health Care Decision Making: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18799.
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Appendix D

Registered Attendees

Diane Allingham-Hawkins

Hayes, Inc.

Euan Ashley

Stanford University

James Battle

University of California, Santa Cruz

Judith Benkendorf

American College of Medical Genetics and Genomics

Jonathan Berg

University of North Carolina at Chapel Hill

Barbara Biesecker

National Human Genome Research Institute, National Institutes of Health

Paul Billings

Life Technologies

Bruce Blumberg

Kaiser Permanente Northern California

Jan Blusztajn

Boston University

Khaled Bouri

U.S. Food and Drug Administration

Pam Bradley

U.S. Food and Drug Administration

Ruth Brenner

Air Force Medical Support Agency

P. J. Brooks

Office of Rare Diseases Research, National Institutes of Health

Suggested Citation:"Appendix D: Registered Attendees." Institute of Medicine. 2014. Assessing Genomic Sequencing Information for Health Care Decision Making: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18799.
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Susie Calhoun

Blue Cross and Blue Shield Association

Federal Employee Program

Khatereh Calleja

Advanced Medical Technology Association

Kathryn Camp

Office of Dietary Supplements

National Institutes of Health

Sarah Carter

J. Craig Venter Institute

Ann Cashion

National Institute of Nursing Research

National Institutes of Health

Robert Cook-Deegan

Duke University

Michael Crossey

TriCore Reference Laboratories

Bob Darnell

New York Genome Center

Howard Hughes Medical Institute Rockefeller University

Patricia Deverka

Center for Medical Technology Policy

Jordan Dimitrakoff

Brady Urological Institute

Maria DeTolve Donoghue

G&M Consulting

Michael Dougherty

American Society of Human Genetics

Tonya Dowd

Quorum Consulting

Lynn Dressler

Mission Health

Jennifer Dreyfus

Dreyfus Consulting, LLC

Emily Edelman

Jackson Laboratory

Stanley Edlavitch

University of Missouri–Kansas City, School of Medicine

Raith Erickson

Complete Genomics

Jessica Everett

University of Michigan

Altovise Ewing

Johns Hopkins University

Greg Feero

Journal of the American Medical Association

Suggested Citation:"Appendix D: Registered Attendees." Institute of Medicine. 2014. Assessing Genomic Sequencing Information for Health Care Decision Making: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18799.
×

Tamara Feldblyum

Office of In Vitro Diagnostics and Radiological Health

Center for Devices and Radiological Health

U.S. Food and Drug Administration

Lynn Fellman

Fellman Studios

Shannon Firth

U.S. News & World Report

Mark Fleury

American Cancer Society, Cancer Action Network

Phyllis Frosst

Personalized Medicine Coalition

Michael Gambello

Emory University School of Medicine

Jonn Gardenier

Retired

Turkan Gardenier

Pragmatica Corporation

Geoff Ginsburg

Duke University

Katrina Goddard

Kaiser Center for Health Research

Gabriela Gomez

Innova Translational Medicine Institute

Peter Goodhand

Global Alliance for Genomics and Health

Kristi Graves

Georgetown University

Robert Green

Brigham & Women’s Hospital and Harvard Medical School

Paula Grossman

Blue Cross and Blue Shield Association

Pertti Hakkinen

National Library of Medicine

National Institutes of Health

Jennifer Hall

Lillehei Heart Institute

University of Minnesota

Alyson Hanish

National Institutes of Health

Madhuri Hegde

Emory University

Kathleen Hickey

Columbia University

Amy Hower

Stanford University

Suggested Citation:"Appendix D: Registered Attendees." Institute of Medicine. 2014. Assessing Genomic Sequencing Information for Health Care Decision Making: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18799.
×

Louis Jacques

Centers for Medicare & Medicaid Services

Samuel Johnson

Kaiser Permanente Colorado

Kristina Krasnov

U.S. Department of State

Shashikant Kulkarni

Washington University

Gabriela Lavezzari

Pharmaceutical Research and Manufacturers of America

Thomas Lehner

National Institute of Mental Health

National Institutes of Health

Debra G. B. Leonard

Fletcher Allen Health Care

University of Vermont College of Medicine

Laura Levit

Institute of Medicine

Emily Levy

Synergy Partners

Mark Lim

FasterCures

Mel Limson

Association for Molecular Pathology

Maggie Linak

U.S. Agency for International Development

David Litwack

U.S. Food and Drug Administration

Suzanne Luther

Social Security Administration

Gary Lyman

Fred Hutchinson Cancer Research Center

Julie Lynch

Veterans Health Administration

Jennifer Madsen

College of American Pathologists

Teri Manolio

National Human Genome Research Institute

Saralyn Mark

National Aeronautics and Space Administration

Anna Mazzucco

National Research Center for Women and Families

Bob McCormack

Veridex, LLC

Robert McDonough

Aetna

Suggested Citation:"Appendix D: Registered Attendees." Institute of Medicine. 2014. Assessing Genomic Sequencing Information for Health Care Decision Making: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18799.
×

Andrew Meltzer

George Washington University

Ronald Miller

Air Force Medical Support Agency

Suman Mukherjee

Genetic Alliance

Padmaja Mummaneni

Center for Drug Evaluation and Research

U.S. Food and Drug Administration

Becky Nagy

Ohio State

Shelley Fuld Nasso

National Coalition for Cancer Survivorship

Ernie Niblack

WaferGen Biosystems, Inc.

Casey Overby

University of Maryland

Erin Payne

Northrop Grumman Health IT

Michelle Penny

Eli Lilly and Company

Vicky Pratt

Association for Molecular Pathology

Ron Przygodzki

Department of Veterans Affairs

Nalini Raghavachari

National Institutes of Health

Kate Reed

Jackson Laboratory

Heidi Rehm

Partners Center for Personalized Genetic Medicine

Kris Rickhoff

Washington University School of Medicine

Mark Robson

Memorial Sloan–Kettering Cancer Center

Allen Roses

Duke University

Julie Rousseau

Claritas Genomics

Howard Saal

Cincinnati Children’s Hospital Medical Center

Sarah Savage

Boston Children’s Hospital

Mari Savickis

American Medical Association

Kate Saylor

National Human Genome Research Institute

Suggested Citation:"Appendix D: Registered Attendees." Institute of Medicine. 2014. Assessing Genomic Sequencing Information for Health Care Decision Making: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18799.
×

Derek Scholes

National Human Genome Research Institute

Joan Scott

Health Resources and Services Administration

Prashant Shah

Intel Corporation

Fay Shamanski

College of American Pathologists

Sam Shekar

Northrop Grumman Health IT

Deborah Smith

Blue Cross and Blue Shield Association

Federal Employee Program

Allen Spiegel

Albert Einstein College of Medicine

Kimberly Strong

Center for Bioethics and Medical Humanities

Medical College of Wisconsin

Katie Johansen Taber

American Medical Association

Darius Tahir

“The Gray Sheet”

Zivana Tezak

U.S. Food and Drug Administration

Lyubov Tmanova

Weill Cornell Medical College

Kemi Tomobi

Student National Medical Association

Hoang-Lan Tran

Quorum Consulting

Sylvia Trujillo

American Medical Association

Lois Tully

National Institute of Nursing Research

National Institutes of Health

David Veenstra

University of Washington

Catharine Wang

Boston University School of Public Health

Michael Watson

American College of Medical Genetics and Genomics

Meredith Weaver

American College of Medical Genetics and Genomics

Jennifer Weisman

Strategic Analysis, Inc.

Suggested Citation:"Appendix D: Registered Attendees." Institute of Medicine. 2014. Assessing Genomic Sequencing Information for Health Care Decision Making: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18799.
×

Jon White

Agency for Healthcare Research and Quality

Janet Williams

University of Iowa

Mary Steele Williams

Association for Molecular Pathology

Catherine Witkop

U.S. Air Force

Rina Wolf

XIFIN, Inc.

Suggested Citation:"Appendix D: Registered Attendees." Institute of Medicine. 2014. Assessing Genomic Sequencing Information for Health Care Decision Making: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18799.
×

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Suggested Citation:"Appendix D: Registered Attendees." Institute of Medicine. 2014. Assessing Genomic Sequencing Information for Health Care Decision Making: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18799.
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Suggested Citation:"Appendix D: Registered Attendees." Institute of Medicine. 2014. Assessing Genomic Sequencing Information for Health Care Decision Making: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18799.
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Suggested Citation:"Appendix D: Registered Attendees." Institute of Medicine. 2014. Assessing Genomic Sequencing Information for Health Care Decision Making: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18799.
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Suggested Citation:"Appendix D: Registered Attendees." Institute of Medicine. 2014. Assessing Genomic Sequencing Information for Health Care Decision Making: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18799.
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Suggested Citation:"Appendix D: Registered Attendees." Institute of Medicine. 2014. Assessing Genomic Sequencing Information for Health Care Decision Making: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18799.
×
Page 103
Suggested Citation:"Appendix D: Registered Attendees." Institute of Medicine. 2014. Assessing Genomic Sequencing Information for Health Care Decision Making: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18799.
×
Page 104
Suggested Citation:"Appendix D: Registered Attendees." Institute of Medicine. 2014. Assessing Genomic Sequencing Information for Health Care Decision Making: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18799.
×
Page 105
Suggested Citation:"Appendix D: Registered Attendees." Institute of Medicine. 2014. Assessing Genomic Sequencing Information for Health Care Decision Making: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18799.
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Rapid advances in technology have lowered the cost of sequencing an individual's genome from the several billion dollars that it cost a decade ago to just a few thousand dollars today and have correspondingly greatly expanded the use of genomic information in medicine. Because of the lack of evidence available for assessing variants, evaluation bodies have made only a few recommendations for the use of genetic tests in health care. For example, organizations, such as the Evaluation of Genomic Applications in Practice and Prevention working group, have sought to set standards for the kinds of evaluations needed to make population-level health decisions. However, due to insufficient evidence, it has been challenging to recommend the use of a genetic test. An additional challenge to using large-scale sequencing in the clinic is that it may uncover "secondary," or "incidental," findings - genetic variants that have been associated with a disease but that are not necessarily related to the conditions that led to the decision to use genomic testing. Furthermore, as more genetic variants are associated with diseases, new information becomes available about genomic tests performed previously, which raises issues about how and whether to return this information to physicians and patients and also about who is responsible for the information.

To help develop a better understanding of how genomic information is used for healthcare decision making, the Roundtable on Translating Genomic-Based Research for Health of the Institute of Medicine held a workshop in Washington,DC in February 2014. Stakeholders, including clinicians, researchers, patients, and government officials, discussed the issues related to the use of genomic information in medical practice. Assessing Genomic Sequencing Information for Health Care Decision Making is the summary of that workshop. This report compares and contrasts evidence evaluation processes for different clinical indications and discusses key challenges in the evidence evaluation process.

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