Genome: Unlocking Life`s Code

Genome: Unlocking Life’s Code
Jean Jenkins PhD RN FAAN National Human Genome Research Institute
Congratulations!
2
2013: A Celebratory Year for Genomics
60th Anniversary
Read the paper at:
http://www.genome.gov/HGP
10/
10th Anniversary
http://www.genome.gov/27527308
Interdisciplinary Collaboration to Improve Patient Outcomes
Genetic and Genomic Influences Across
the Healthcare Continuum
Preconception/
Prenatal
After End
Of Life
Newborn
Screening
Management
At End of Life
Risk
Identification
Individualized
Therapy
Screening/
Diagnosis
Disease
Characterization
Charting a course for genomic
medicine from base pairs to bedside
Advancing the provision of
healthcare
• Clinical research:
diagnostics, therapeutics
• Evidence base: outcomes
of care; cost
effectiveness; reduction
of health disparities
• Delivery of information to
patients: tools (EHR);
access; healthcare
provider education;
public literacy
Green, Guyer, & NHGRI. (2011).
Nature, 470(7333), 204-213
http://www.genome.gov/27543215
Healthcare Provider Competencies
Healthcare providers are not
adequately trained to support the use
of personalized healthcare.
Resources, tools, and education are
needed by all healthcare disciplines
to be able to assist the public to
understand personal health issues
involving genomic information.
http://www.genome.gov/27527634
http://www.genome.gov/Pages/Careers/HealthProfessionalEducation/geneticscompetency.pdf
Educational Resources
G2C2: Resource
Repository
Talking
Glossary
genome.gov/27549874
G3C: Case
Scenarios
Genomic Literacy Meeting Report
 Genomic information will touch
Hurle, B. et al.
(2013). Genetics
in Medicine.
doi:10.1038/gim.20
13.14
http://www.genom
e.gov/27553433
virtually every person in the
forthcoming generations
 Currently there is underuse of
personalized genomic
approaches
 Current approaches do not
prepare the public to understand
personal health issues involving
genomics
 Inadequate healthcare provider
genomic knowledge
Genomic Literacy Meeting Research
Opportunities
 For studying genomic health literacy:
ELSI; family history; presentation of
genomic information; new partnerships
 Improving K-12 genomic science literacy
 Studying the role of media in genomic
literacy of the public
 Strategies to effectively engage the public
NHGRI-Smithsonian Genomics Exhibition
Origins of NHGRI-Smithsonian Partnership
• Proximity of NIH and Smithsonian
• 2013: Celebratory Year for Genomics
National Museum of Natural History (NMNH)
• Largest and most visited natural history museum in
the world
• #1 visited museum in the United States
• >7 million visitors to NMNH each year
• >6 million visitors to NMNH web site each year
Genome: Unlocking Life’s Code
“The genome contains the code of
instructions for building all organisms.
Learning about the human genome
will revolutionize your thinking about
your biology and health, and human’s
place in the natural world.“
• Opening in June 2013
• ~2900 square foot exhibition
• Hall 23 (adjacent to Hope Diamond)
• Resident in Smithsonian NMNH for ~1 year
• Subsequently will tour North America for 4-5 years
• Significant associated programming and outreach
Exhibition Themes
 The Genome Within Us
 Your Genome, Your Health
 Next-Gen Medicine
 Natural World
 Genomic Journey
http://www.genome.gov/27549245
Exhibition Layout By Theme
Next Gen Medicine
Genome Within
Your Genome, Your Health
Natural World
Genomic Journey
The Genome Within Us
Your Genome, Your Health
Your Genome, Your Health
Next-Gen Medicine
Next-Gen Medicine
Next-Gen Medicine:
Solving Medical Mysteries
Natural World :
Reading Nature’s Code
Genomic Journey
Genomic Journey:
Exploring Our Ancestry
Genome: Unlocking Life’s Code
Public Engagement Opportunities
What Would YOU Decide?
Exhibition Public Programming
 Partnership with NMNH, NHGRI, and
Smithsonian Associates
 Series of nine educational programs that will
be offered to the public - September 2013 to
July 2014
 Creating conversations with the public
around genomics
Exhibition Public Programming:
Personal Genomics
 The Genomic Journey: Search for Your Roots
 Citizen Science and Genomics Research
Exhibition Public Programming:
Genomics and Society
 Exploring the Drama of DNA: Genomics,
Society and Theatre
 Debate on an Ethical, Legal, or Social
Question in Genomics
 Decoding Our Past
Exhibition Public Programming:
Pop Culture and Conversations
 Smithsonian led programming:
 Genomes in Pop Culture
 Genomics and Wine
 Mingle
 World Café: Real-life Genome Stories
Exhibition Website Overview
 On behalf of the NMNH-NHGRI partnership,
NHGRI is guiding the development and
deployment of an educational website.
 This website will function as a robust learning
tool for the general public, teachers, and
students.
 http://unlockinglifescode.org/
 Plus Smithsonian website
http://www.mnh.si.edu/exhibits/genome/
Potential Travel Sites for Exhibition
Donors
Life Technologies Foundation
Brin Wojcicki Foundation
Celgene Corporation
Johnson and Johnson
Pacific Biosciences & Mike and Beth Hunkapiller
23andMe, Inc.
Affymetrix
American Association for Clinical Chemistry
American College of Medical Genetics and Genomics
Wallace H. Coulter Foundation
Stephen P. A. Fodor
Foundation of the National Institutes of Health
Genentech
New England Biolabs
Promega Corporation
The History Channel
This exhibit was made possible in part by financial support secured by the
Foundation of the National Institutes of Health
Thanks to:
 Dr Eric Green, NHGRI Director
 Vence Bonham, Branch Chief, Education
and Community Involvement, DPCE,
NHGRI
 Dr Carla Easter, Deputy Director,
Education and Community Involvement,
DPCE, NHGRI
 The Advisory Group
 And the Smithsonian
DNA & YOU
ARE
THE ESSENTIAL BUILDING BLOCKS OF
HEALTH CARE
We Must Be Willing To Let Go Of The
Life We Have Planned,
So As To Have The Life That Is Waiting
For Us …..
Questions/Discussion