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

Preconception/

Prenatal

Newborn Screening

Risk Identification

Screening/

Diagnosis

Disease

Characterization

Individualized

Therapy

Management

At End of Life

After End

Of Life

Genetic and Genomic Influences Across

the Healthcare Continuum

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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

genome.gov/27549874

Educational Resources

G2C2: Resource

Repository

Talking

Glossary G3C: Case

Scenarios

Genomic Literacy Meeting Report

Hurle, B. et al.

(2013). Genetics

in Medicine.

doi:10.1038/gim.20

13.14

http://www.genom

e.gov/27553433

Genomic information will touch

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

• Proximity of NIH and Smithsonian

• 2013: Celebratory Year for Genomics

Origins of NHGRI-Smithsonian Partnership

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

Your Genome, Your Health

Genome Within

Genomic Journey

Natural World

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

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

Donors

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