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Suggested Citation:"Appendix D: Registered Attendees." National Academies of Sciences, Engineering, and Medicine. 2020. Exploring the Current Landscape of Consumer Genomics: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25713.
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Appendix D

Registered Attendees

Lori Achman

Government Accountability Office

Joseph Alper

Science Writer

Joyce Altschule

Individual

Sara Altschule

Consumer

Maria Arif

Howard University

Naomi Aronson

Blue Cross and Blue Shield Association

Cynthia Bens

Personalized Medicine Coalition

Adam Berger

National Institutes of Health

Karina Bienfait

Merck and Co., Inc.

Barbara Biesecker

RTI International

Cinnamon Bloss

University of California, San Diego

Bruce Blumberg

Kaiser Permanente School of Medicine

Danielle Bonadies

My Gene Counsel

Vence Bonham

National Human Genome Research Institute

Natasha Bonhomme

Genetic Alliance

Megan Anderson Brooks

Innovation Policy Solutions

Suggested Citation:"Appendix D: Registered Attendees." National Academies of Sciences, Engineering, and Medicine. 2020. Exploring the Current Landscape of Consumer Genomics: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25713.
×

Shawneequa Callier

The George Washington University

Ariadne Campble

The Washington Center

Elaine Collier

National Center for Advancing Translational Sciences

Kayla Cooper

National Institutes of Health

Thao Dinh

Johns Hopkins University

Andrea Jackson Dipina

National Institutes of Health

Michael Dobias

The Pew Charitable Trusts

Siobhan Dolan

Albert Einstein College of Medicine/Montefiore Medical Center

Emily Edelman

The Jackson Laboratory

Christin Engelhardt

American Cancer Society Cancer Action Network

Grace-Ann Fasaye

National Cancer Institute

W. Gregory Feero

Journal of the American Medical Association

Matthew Ferber

Mayo Clinic

Tempora Fisher

National Institutes of Health

Mark Fleury

American Cancer Society Cancer Action Network

Megan Frone

National Cancer Institute

Stephanie Malia Fullerton

University of Washington

Ann Geiger

National Cancer Institute

Kenneth Getz

Tufts University School of Medicine

Elena Ghanaim

National Human Genome Research Institute

Geoffrey Ginsburg

Duke University

Aaron Goldenberg

Case Western Reserve University School of Medicine

Eve Granatosky

American Society of Human Genetics

Nasreen Haque

New York Medical College

Alaina Harris

Health Resources and Services Administration

Rebecca Helgesen

Penn Medicine

Suggested Citation:"Appendix D: Registered Attendees." National Academies of Sciences, Engineering, and Medicine. 2020. Exploring the Current Landscape of Consumer Genomics: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25713.
×

Kathy Helzlsouer

National Cancer Institute

Ross Henderson

CAREM, LLC

Marvin Higgins

Yoga for Peace, Joy and Love

Brittany Hollister

National Human Genome Research Institute

Gillian Hooker

National Society of Genetic Counselors

Alejandra Hurtado

Georgetown University

Sadie Hutson

University of Tennessee, Knoxville

Mira Irons

American Medical Association

Praduman Jain

Vibrent Health

Gail Javitt

Epstein Becker Green

Richard Jordan

Blue Community Consortium

Cristina Kapustij

National Human Genome Research Institute

Robert Karp

National Institute of Diabetes and Digestive and Kidney Diseases

Manjula Kasoji

Booz Allen Hamilton

Samata Katta

American Society of Human Genetics/National Human Genome Research Institute

Soohyun Kim

Health Resources and Services Administration

William Klein

National Cancer Institute/National Institutes of Health

Danuta Krotoski

National Institute of Child Health and Human Development

Kailey Lamb

The George Washington University Medical Faculty Associates

Katherine Lamberson

Genetic Alliance

Kristofor Langlais

National Institutes of Health

Jordan Laser

Northwell Health

Gabriela Lavezzari

GlaxoSmithKline

Alexandra Lebensohn

National Institutes of Health

Jennifer Leib

Innovation Policy Solutions

Suggested Citation:"Appendix D: Registered Attendees." National Academies of Sciences, Engineering, and Medicine. 2020. Exploring the Current Landscape of Consumer Genomics: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25713.
×

Charles Macri

The George Washington University

Jean-Claude Marshall

Pfizer Inc.

Michelle McClure

American College of Medical Genetics and Genomics

Sean McConnell

American Medical Association

Amy McGuire

Baylor College of Medicine Center for Medical Ethics and Health Policy

George Mensah

National Heart, Lung, and Blood Institute

Wynn Meyer

National Institutes of Health

Mona Miller

American Society of Human Genetics

Allison Miner

Kaiser Permanente

Timothy Morck

Spectrum Nutrition, LLC

Christiane Morecock

The George Washington University Medical Faculty Associates

Maximilian Muenke

American College of Medical Genetics and Genomics

Gregory Nacarelli

Johns Hopkins University

Phillip Nichols

Gwood llc

Robert Nussbaum

Invitae

Kristina Obom

Johns Hopkins University

Jeanne O’Brien

Shady Grove Fertility

Natasha Pacheco

Inova Translational Medicine Institute

Cindy Paredes

Corazón Latino

Michelle Penny

Biogen

Valentina Petkov

National Cancer Institute

Anna Pettersson

Pfizer Inc.

María Pfund

Congressional Hispanic Caucus Institute

Dorothy Pomerantz

FitchInk

Victoria Pratt

Association for Molecular Pathology

Suggested Citation:"Appendix D: Registered Attendees." National Academies of Sciences, Engineering, and Medicine. 2020. Exploring the Current Landscape of Consumer Genomics: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25713.
×

Daryl Pritchard

Personalized Medicine Coalition

Nalini Raghavachari

National Institute on Aging

Pratima Rayavarapu

Johns Hopkins University

Jessica Reusch

National Institutes of Health

Catharine Riley

Health Resources and Services Administration

Laura Lyman Rodriguez

Geisinger National Precision Health

Ella Saccon

National Cancer Institute

Tina Saey

Science News

Meredith Safford

Johns Hopkins University

Faswilla Sampson

Personalized Medicine Coalition

Kunal Sanghavi

The Jackson Laboratory

V. Schneider

National Aeronautics and Space Administration

Derek Scholes

American Society of Human Genetics

Emma Schopp

National Human Genome Research Institute

Melissa Schweitzer

Human Longevity, Inc.

Joan Scott

Health Resources and Services Administration

Geetha Senthil

National Institute of Mental Health

Sam Shekar

Consultant

Nonniekaye Shelburne

National Cancer Institute

Niki Sidiropoulos

The University of Vermont Health Network Medical Group

Hilary Silver

The George Washington University

Andrew Singleton

National Institute on Aging

Emily Smith

CBR, a California Cryobank Life Sciences Company

Kayla Smith

Personalized Medicine Coalition

Gabriel Soto

IADF

Nina Sperber

Duke University

Suggested Citation:"Appendix D: Registered Attendees." National Academies of Sciences, Engineering, and Medicine. 2020. Exploring the Current Landscape of Consumer Genomics: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25713.
×

Angela Starkweather

University of Connecticut

Timothy Stenzel

Food and Drug Administration

Coco Stewart

National Human Genome Research Institute

Ryan Taft

Illumina, Inc.

Jacquelyn Taylor

New York University College of Nursing and School of Medicine

Sharon Terry

Genetic Alliance

Parmi Shailesh Thakker

Johns Hopkins University

Naiju Thomas

Johns Hopkins University

Austin Thompson

Technology and Media Initiative

Darla Thompson

Robert Wood Johnson Foundation Health Policy Research Scholars/The George Washington University

Linda Thompson

Howard University

Lois Tully

National Institute of Nursing Research

Joyce Tung

23andMe

Camila Valencia

Inter-American Development Bank

Amanda Vernon

American Academy of Arts & Sciences

Vivian Ota Wang

National Cancer Institute

Michael Watson

American College of Medical Genetics and Genomics

Karen Weck

University of North Carolina School of Medicine

Catherine Wicklund

Northwestern University

Huntington Willard

Geisinger National Precision Health

Beth Wilmot

National Institute on Aging

Anier Landon Woodyard

Innovatio Et Cetera Corporation

Sarah Wordsworth

University of Oxford

Yining Xie

GS

Alicia Zhou

Color Genomics

Suggested Citation:"Appendix D: Registered Attendees." National Academies of Sciences, Engineering, and Medicine. 2020. Exploring the Current Landscape of Consumer Genomics: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25713.
×
Page 87
Suggested Citation:"Appendix D: Registered Attendees." National Academies of Sciences, Engineering, and Medicine. 2020. Exploring the Current Landscape of Consumer Genomics: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25713.
×
Page 88
Suggested Citation:"Appendix D: Registered Attendees." National Academies of Sciences, Engineering, and Medicine. 2020. Exploring the Current Landscape of Consumer Genomics: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25713.
×
Page 89
Suggested Citation:"Appendix D: Registered Attendees." National Academies of Sciences, Engineering, and Medicine. 2020. Exploring the Current Landscape of Consumer Genomics: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25713.
×
Page 90
Suggested Citation:"Appendix D: Registered Attendees." National Academies of Sciences, Engineering, and Medicine. 2020. Exploring the Current Landscape of Consumer Genomics: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25713.
×
Page 91
Suggested Citation:"Appendix D: Registered Attendees." National Academies of Sciences, Engineering, and Medicine. 2020. Exploring the Current Landscape of Consumer Genomics: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25713.
×
Page 92
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 Exploring the Current Landscape of Consumer Genomics: Proceedings of a Workshop
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Consumer genomics, encompassing both direct-to-consumer applications (i.e., genetic testing that is accessed by a consumer directly from a commercial company apart from a health care provider) and consumer-driven genetic testing (i.e., genetic testing ordered by a health care provider in response to an informed patient request), has evolved considerably over the past decade, moving from more personal utility-focused applications outside of traditional health care to interfacing with clinical care in nontraditional ways. As consumer genomics has increasingly intersected with clinical applications, discussions have arisen around the need to demonstrate clinical and analytical validity and clinical utility due to the potential for misinterpretation by consumers. Clinical readiness and interest for this information have presented educational and training challenges for providers. At the same time, consumer genomics has emerged as a potentially innovative mechanism for thinking about health literacy and engaging participants in their health and health care.

To explore the current landscape of consumer genomics and the implications for how genetic test information is used or may be used in research and clinical care, the Roundtable on Genomics and Precision Health of the National Academies of Sciences, Engineering, and Medicine hosted a public workshop on October 29, 2019, in Washington, DC. Discussions included such topics as the diversity of participant populations, the impact of consumer genomics on health literacy and engagement, knowledge gaps related to the use of consumer genomics in clinical care, and regulatory and health policy issues such as data privacy and security. A broad array of stakeholders took part in the workshop, including genomics and consumer genomics experts, epidemiologists, health disparities researchers, clinicians, users of consumer genomics research applications, representatives from patient advocacy groups, payers, bioethicists, regulators, and policy makers. This publication summarizes the presentations and discussion of the workshop.

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