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Genomic Literacy Education and Engagement Strategic Visioning Meeting

Event Details

On March 13-14, 2017, the National Human Genome Research Institute (NHGRI) in partnership with the Foundation for the National Institutes of Health (FNIH) hosted a strategic visioning meeting for a proposed GLEE Initiative.

The meeting was held at the Natcher Conference Center on the NIH Main Campus in Bethesda, Maryland and ~160 people attended from diverse communities including academia, industry, community-based organizations, non-profits, government and K-16 education organizations. At the meeting, participants discussed proposed elements from working groups focused on each of the three target audiences (K-16 students and educators, health care providers and the community/public) and proposed a cohesive strategic vision for the next 1-5 years.

to

Natcher Conference Center
Ruth L. Kirschstein Auditorium

Agenda

  • Monday, March 13, 2017
  • 8:00 - 8:30 a.m. - Registration
  • 8:30 - 9:00 a.m. - Welcome & Overview
    Eric Green, M.D., Ph.D.
    Director, National Human Genome Research Institute
  • 9:00 - 9:10 a.m. - Perspectives from the Foundation for the National Institutes of Health (NIH)
    Maria Freire, Ph.D.
    President and Executive Director, Foundation for the NIH
  • 9:10 - 9:25 a.m. - Community Perspectives I: The Need for Genomic Literacy
    Bob Nussbaum, M.D.
    Invitae
  • 9:25 - 9:40 a.m. - Community Perspectives II: The Need for Genomic Literacy
    Louisa Stark, Ph.D.
    University of Utah
  • 9:40 - 10:25 a.m. - K-16 Working Group Presentation
    Bryony Ruegg, Ph.D.
    Bio-Rad Laboratories

    Beth Tuck
    National Human Genome Research Institute
  • 10:25 - 10:45 a.m. - Break
  • 10:45 - 11:30 a.m. - Healthcare Provider Working Group Presentation
    Katie Johansen Taber, Ph.D.
    American Medical Association

    Bob Wildin, M.D.
    National Human Genome Research Institute
  • 11:30 a.m. - 12:15 p.m. Community/Public Working Group Presentation
    Louisa Stark, Ph.D.
    University of Utah

    Carla Easter, Ph.D.
    National Human Genome Research Institute
  • 12:15 - 12:20 p.m. Instructions for Breakout Sessions
    Beth Tuck
    National Human Genome Research Institute
  • 12:20 - 1:15 p.m. - Lunch
  • 1:15 - 4:30 p.m. - Working Group Discussions
    K-16 Working Group: Room F1/F2
    Community/Public Working Group: Room E1/E2
    Healthcare Provider Working Group: Room D (and Room A if needed)
  • 4:30 - 4:45 p.m. - Break
  • 4:45 - 5:00 p.m. Regroup - Questions for Tomorrow
    Laura Lyman Rodriguez, Ph.D.
    National Human Genome Research Institute
  • 5:30 - 7:00 p.m. - Reception
  • Tuesday, March 14, 2017
  • 8:30 - 8:45 a.m. - Charge for Day 2
    Carla Easter, Ph.D.
    National Human Genome Research Institute
  • 8:45 - 9:30 a.m. - K-16 Working Group Summary

    White Paper
  • 9:30-10:15 a.m. - Healthcare Provider Working Group Summary

    White Paper
  • 10:15 - 10:30 a.m. - Break
  • 10:30 - 11:15 a.m. - Community/Public Working Group Summary
  • 11:15 - 11:25 a.m. - Group Picture
  • 11:25 a.m. - 12:30 p.m. - Lunch
  • 12:30 - 1:30 p.m. - Synthesis and Visioning Discussion
    Facilitated by Larry Brody, Ph.D.
    National Human Genome Research Institute
  • 1:30 - 2:00 p.m.  - Developing an Action Plan and Next Steps
    Facilitated by Eric Green, M.D., Ph.D.
    National Human Genome Research Institute
  • 2:00 p.m. - Adjourn

Attendee List

Group picture

 

Name Institution

Frederica Adelman

Smithsonian Associates

Terry Adkins

Myriad Genetics

Philip Alderson

NIH/NLM

Maria Alvarez

El Paso Community College

Zeke Alvarez-Saavedra

miniPCR

Kathy Arnos

Gallaudet University

Deana Around Him

National Congress of American Indians

Sylvia Au

Hawaii State Department of Health

Kellan Baker

Center for American Progress (CAP)

Lu Barker

Association for Molecular Pathology (AMP)

Tony Beck

NIH/NCATS (SEPA)

Suzanne Belinson

Blue Cross Blue Shield (BCBS)

Ada Bends

Rocky Mountain Tribal Leaders Council

Judith Benkendorf

American College of Medical Genetics (ACMG)

Jeremy Bennett

Myriad Genetics

Kathy Blazer

City of Hope

Kate Blizinsky

NIH/OD

Mark Bloom

Biological Sciences Curriculum Study (BSCS)

Jermane Bond

Health Equity Analytics Lab

Laura Bonetta

Howard Hughes Medical Institute BioInteractive (HHMI)

Vence Bonham

NIH/NHGRI

Jo Boughman

University of Maryland

Rosalina Bray

NIH/OD

Larry Brody

NIH/NHGRI

Jennifer Broo

St. Ursula Academy

Alyssa Brooks

NIH/NINR

Lesley Brown

Baltimore City Community College

Jen Carroll

Illumina

June Carroll

Mt. Sinai Toronto

Darlene Cavalier

SciStarter; Science Cheerleaders

Khanh Chau

Walter Johnson High School

Amanda Chavenson

Smithsonian Associates

Wen-ying Sylvia Chou

NIH/NCI

Elizabeth Cohn

Columbia University

Elizabeth Collaton

WETA (PBS)

Tim Curry

Mayo Clinic

Gwen Darien

National Patient Advocate Foundation

Shoumita Dasgupta

Association of Professors of Human and Medical Genetics (APHMG)

Christina Daulton

NIH/NHGRI

Jeff Day

NIH/NLM

Ernesto del Aguila

NIH/NHGRI

Thao Do

23andMe

Kate Donigan

FDA

Ysabel Duron

Latinas Contra Cancer

Carla Easter

NIH/NHGRI

Emily Edelman

Jackson Laboratory (Jax)

John Emmerich

Discovery World

Cindy Encarnacion

St. Louis Science Center

David Evans

National Science Teachers Association (NSTA)

Jim Evans

University of North Carolina School of Medicine

Matt Ferber

Mayo Clinic

David Flannery

American College of Medical Genetics (ACMG)

Sharon Flynn

NIH/NINR

Ruby Gadelrab

23andMe

Marnie Gelbart

pgEd

Jim Goldberg

Counsyl

Vanessa Gonzalez

Smithsonian Institution National Museum of Natural History (NMNH)

Eric Green

NIH/NHGRI

Ella Greene-Moton

University of Michigan, School of Public Health, Ann Arbor

Sue Gross

Phenogen Sciences Inc

Chris Gunter

Autism Center, Emory University

Bassem Haddad

Georgetown University

Susanne Haga

Duke University

Michael Hahn

NIH/NHGRI

Faith Harrow

NIH/NHGRI

Rich Haspel

Harvard University

Allen Herman

HEAL

Rebecca Hong

NIH/NHGRI

Sarah Hull

NIH/NHGRI

Belen Hurle

NIH/NHGRI

Henrietta Hyatt-Knorr

NIH/GARD

Mary Jackson Scroggins

Pinkie Hugs, LLC and In My Sister's Care

Jean Jenkins

DNAandU

Katie Johansen Taber

American Medical Association

Sam Johnson

American Association of Colleges of Pharmacy (AACP)

Sonya Jooma

NIH/NHGRI

Jim Kahler

USDA/NIFA - 4-H National Headquarters

Cristina Kapustij

NIH/NHGRI

Esther Kim

23andMe

Laura Koehly

NIH/NHGRI

Laura Koontz

FDA

Sunil Kripalani

Vanderbilt University

Neil Lamb

HudsonAlpha Institute for Biotechnology

Lisa Lauxman

USDA/NIFA - 4-H National Headquarters

Joslynn Lee

DNA Learning Center/Cyverse (DNALC)

Minnky Lee

NIH/NHGRI

Darryl Leja

NIH/NHGRI

Elissa Levin

Helix

Ashley Lewis

NIH/NHGRI

Janine Lewis

NIH/GARD

Len Lichtenfeld

American Cancer Society (ACS)

Michael Linderman

Middlebury College

Nicole Lockhart

NIH/NHGRI

Becky Menlove

Natural History Museum of Utah

Donna Messersmith

NIH/NHGRI

Patricia Miller

Consultant

Steve Mockrin

NIH/OD

Valentine Mukundente

Community Faces of Utah

Steve Murphy

MedScape/WebMD

Kiran Musunuru

American Heart Association (AHA)

Benedetta Naglieri

MdBio Foundation (BioBus)

Bob Nussbaum

Invitae

Ron O'Brien

Thermo Fisher Scientific

James O'Leary

Genetic Alliance

Francis Onduso

Sitting Bull College

Chol Pak

Thermo Fisher Scientific

Jef Palframan

NIH/OD

Kiara Palmer

NIH/NHGRI

Virginia Pantella

Gaithersburg Middle School

Devona Perrineau

NIH/NHGRI

Susan Persky

NIH/NHGRI

Sharon Plon

Baylor College of Medicine

Norma Poll-Hunter

Association of American Medical Colleges (AAMC)

Karen Possemato

Illumina

Tiffany Powell-Wiley

NIH/NHLBI

Kanika Pulliam

American Society of Human Genetics (ASHG)

Adrian Quijada

Tohono O'odham Community College

Michael Rackover

Philadelphia University

Teresa Ramirez

NIH/NHGRI

Jaclyn Reeves-Pepin

National Association of Biology Teachers (NABT)

Jacques Retief

Illumina

Daphne Rickard

Irving High School; HOSA-Future Health Professionals

Nadeene Riddick

NSF

Rebecca Roberts

Smithsonian Associates

Laura Rodriguez

NIH/NHGRI

Carla Romney

Boston University - CityLab

Anne Rosenwald

Georgetown

Beth Ruedi

AAAS, Science in the Classroom

Bryony Ruegg

Bio-Rad Laboratories

Maya Sabatello

Columbia University

Rhonda Schonberg

National Society of Genetic Counselors (NSGC)

Michelle Smith

University of Maine

Michelle Snyder

NIH/GARD

Raman Sood

NIH/NHGRI

Sarah South

Ancestry.com

Patricia Spears

North Carolina State University

Louisa Stark

University of Utah Genetic Science Learning Center (GSLC)

Barry Starr

The Tech

Erik Stegman

Center for Native American Youth

Amy Swanson

Illumina

Temese Szalai

Madarka

Robert Tai

UVA

O. Fahina Tavake-Pasi

National Tongan American Society

Jim Thomas

NIH/NHGRI

Ivory Toldson

Quality Education for Minorities (QEM) Network

Beth Tuck

NIH/NHGRI

Jeff Vance

American Neurological Association (ANA)

Lisa Vincent

GeneDx

Caer Vitek

Mayo Clinic

Lorelei Walker

University of Washington Health Equity Circle

Patty Ward

Museum of Science and Industry

Steven Weinberger

American College of Physicians (ACP)

Kristin Weitzel

University of Florida - College of Pharmacy

Kris Wetterstrand

NIH/NHGRI

Wanda Whitney

NIH/NLM and DC Area Health Sciences Libraries

Cathy Wicklund

Northwestern, Genetic Counseling Program

John Wilbanks

Sage Bionetworks

Bob Wildin

NIH/NHGRI

Chris Williams

NSF

Rosann Wise

NIH/NHGRI

Jeff Witherly

NIH/NHGRI

Doris Withers

Medgar Evars College

Charlie Wray

Jackson Laboratory (Jax)

Robin Wright

University of Minnesota

Leisa Zigman

The Genome Partnership (AGBT)

 

  • Attendee List

    Group picture

     

    Name Institution

    Frederica Adelman

    Smithsonian Associates

    Terry Adkins

    Myriad Genetics

    Philip Alderson

    NIH/NLM

    Maria Alvarez

    El Paso Community College

    Zeke Alvarez-Saavedra

    miniPCR

    Kathy Arnos

    Gallaudet University

    Deana Around Him

    National Congress of American Indians

    Sylvia Au

    Hawaii State Department of Health

    Kellan Baker

    Center for American Progress (CAP)

    Lu Barker

    Association for Molecular Pathology (AMP)

    Tony Beck

    NIH/NCATS (SEPA)

    Suzanne Belinson

    Blue Cross Blue Shield (BCBS)

    Ada Bends

    Rocky Mountain Tribal Leaders Council

    Judith Benkendorf

    American College of Medical Genetics (ACMG)

    Jeremy Bennett

    Myriad Genetics

    Kathy Blazer

    City of Hope

    Kate Blizinsky

    NIH/OD

    Mark Bloom

    Biological Sciences Curriculum Study (BSCS)

    Jermane Bond

    Health Equity Analytics Lab

    Laura Bonetta

    Howard Hughes Medical Institute BioInteractive (HHMI)

    Vence Bonham

    NIH/NHGRI

    Jo Boughman

    University of Maryland

    Rosalina Bray

    NIH/OD

    Larry Brody

    NIH/NHGRI

    Jennifer Broo

    St. Ursula Academy

    Alyssa Brooks

    NIH/NINR

    Lesley Brown

    Baltimore City Community College

    Jen Carroll

    Illumina

    June Carroll

    Mt. Sinai Toronto

    Darlene Cavalier

    SciStarter; Science Cheerleaders

    Khanh Chau

    Walter Johnson High School

    Amanda Chavenson

    Smithsonian Associates

    Wen-ying Sylvia Chou

    NIH/NCI

    Elizabeth Cohn

    Columbia University

    Elizabeth Collaton

    WETA (PBS)

    Tim Curry

    Mayo Clinic

    Gwen Darien

    National Patient Advocate Foundation

    Shoumita Dasgupta

    Association of Professors of Human and Medical Genetics (APHMG)

    Christina Daulton

    NIH/NHGRI

    Jeff Day

    NIH/NLM

    Ernesto del Aguila

    NIH/NHGRI

    Thao Do

    23andMe

    Kate Donigan

    FDA

    Ysabel Duron

    Latinas Contra Cancer

    Carla Easter

    NIH/NHGRI

    Emily Edelman

    Jackson Laboratory (Jax)

    John Emmerich

    Discovery World

    Cindy Encarnacion

    St. Louis Science Center

    David Evans

    National Science Teachers Association (NSTA)

    Jim Evans

    University of North Carolina School of Medicine

    Matt Ferber

    Mayo Clinic

    David Flannery

    American College of Medical Genetics (ACMG)

    Sharon Flynn

    NIH/NINR

    Ruby Gadelrab

    23andMe

    Marnie Gelbart

    pgEd

    Jim Goldberg

    Counsyl

    Vanessa Gonzalez

    Smithsonian Institution National Museum of Natural History (NMNH)

    Eric Green

    NIH/NHGRI

    Ella Greene-Moton

    University of Michigan, School of Public Health, Ann Arbor

    Sue Gross

    Phenogen Sciences Inc

    Chris Gunter

    Autism Center, Emory University

    Bassem Haddad

    Georgetown University

    Susanne Haga

    Duke University

    Michael Hahn

    NIH/NHGRI

    Faith Harrow

    NIH/NHGRI

    Rich Haspel

    Harvard University

    Allen Herman

    HEAL

    Rebecca Hong

    NIH/NHGRI

    Sarah Hull

    NIH/NHGRI

    Belen Hurle

    NIH/NHGRI

    Henrietta Hyatt-Knorr

    NIH/GARD

    Mary Jackson Scroggins

    Pinkie Hugs, LLC and In My Sister's Care

    Jean Jenkins

    DNAandU

    Katie Johansen Taber

    American Medical Association

    Sam Johnson

    American Association of Colleges of Pharmacy (AACP)

    Sonya Jooma

    NIH/NHGRI

    Jim Kahler

    USDA/NIFA - 4-H National Headquarters

    Cristina Kapustij

    NIH/NHGRI

    Esther Kim

    23andMe

    Laura Koehly

    NIH/NHGRI

    Laura Koontz

    FDA

    Sunil Kripalani

    Vanderbilt University

    Neil Lamb

    HudsonAlpha Institute for Biotechnology

    Lisa Lauxman

    USDA/NIFA - 4-H National Headquarters

    Joslynn Lee

    DNA Learning Center/Cyverse (DNALC)

    Minnky Lee

    NIH/NHGRI

    Darryl Leja

    NIH/NHGRI

    Elissa Levin

    Helix

    Ashley Lewis

    NIH/NHGRI

    Janine Lewis

    NIH/GARD

    Len Lichtenfeld

    American Cancer Society (ACS)

    Michael Linderman

    Middlebury College

    Nicole Lockhart

    NIH/NHGRI

    Becky Menlove

    Natural History Museum of Utah

    Donna Messersmith

    NIH/NHGRI

    Patricia Miller

    Consultant

    Steve Mockrin

    NIH/OD

    Valentine Mukundente

    Community Faces of Utah

    Steve Murphy

    MedScape/WebMD

    Kiran Musunuru

    American Heart Association (AHA)

    Benedetta Naglieri

    MdBio Foundation (BioBus)

    Bob Nussbaum

    Invitae

    Ron O'Brien

    Thermo Fisher Scientific

    James O'Leary

    Genetic Alliance

    Francis Onduso

    Sitting Bull College

    Chol Pak

    Thermo Fisher Scientific

    Jef Palframan

    NIH/OD

    Kiara Palmer

    NIH/NHGRI

    Virginia Pantella

    Gaithersburg Middle School

    Devona Perrineau

    NIH/NHGRI

    Susan Persky

    NIH/NHGRI

    Sharon Plon

    Baylor College of Medicine

    Norma Poll-Hunter

    Association of American Medical Colleges (AAMC)

    Karen Possemato

    Illumina

    Tiffany Powell-Wiley

    NIH/NHLBI

    Kanika Pulliam

    American Society of Human Genetics (ASHG)

    Adrian Quijada

    Tohono O'odham Community College

    Michael Rackover

    Philadelphia University

    Teresa Ramirez

    NIH/NHGRI

    Jaclyn Reeves-Pepin

    National Association of Biology Teachers (NABT)

    Jacques Retief

    Illumina

    Daphne Rickard

    Irving High School; HOSA-Future Health Professionals

    Nadeene Riddick

    NSF

    Rebecca Roberts

    Smithsonian Associates

    Laura Rodriguez

    NIH/NHGRI

    Carla Romney

    Boston University - CityLab

    Anne Rosenwald

    Georgetown

    Beth Ruedi

    AAAS, Science in the Classroom

    Bryony Ruegg

    Bio-Rad Laboratories

    Maya Sabatello

    Columbia University

    Rhonda Schonberg

    National Society of Genetic Counselors (NSGC)

    Michelle Smith

    University of Maine

    Michelle Snyder

    NIH/GARD

    Raman Sood

    NIH/NHGRI

    Sarah South

    Ancestry.com

    Patricia Spears

    North Carolina State University

    Louisa Stark

    University of Utah Genetic Science Learning Center (GSLC)

    Barry Starr

    The Tech

    Erik Stegman

    Center for Native American Youth

    Amy Swanson

    Illumina

    Temese Szalai

    Madarka

    Robert Tai

    UVA

    O. Fahina Tavake-Pasi

    National Tongan American Society

    Jim Thomas

    NIH/NHGRI

    Ivory Toldson

    Quality Education for Minorities (QEM) Network

    Beth Tuck

    NIH/NHGRI

    Jeff Vance

    American Neurological Association (ANA)

    Lisa Vincent

    GeneDx

    Caer Vitek

    Mayo Clinic

    Lorelei Walker

    University of Washington Health Equity Circle

    Patty Ward

    Museum of Science and Industry

    Steven Weinberger

    American College of Physicians (ACP)

    Kristin Weitzel

    University of Florida - College of Pharmacy

    Kris Wetterstrand

    NIH/NHGRI

    Wanda Whitney

    NIH/NLM and DC Area Health Sciences Libraries

    Cathy Wicklund

    Northwestern, Genetic Counseling Program

    John Wilbanks

    Sage Bionetworks

    Bob Wildin

    NIH/NHGRI

    Chris Williams

    NSF

    Rosann Wise

    NIH/NHGRI

    Jeff Witherly

    NIH/NHGRI

    Doris Withers

    Medgar Evars College

    Charlie Wray

    Jackson Laboratory (Jax)

    Robin Wright

    University of Minnesota

    Leisa Zigman

    The Genome Partnership (AGBT)

     

Last updated: May 20, 2019