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.
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
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