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PRIORITIES FOR PUBLIC HEALTH GENOMICS PRIORITIES FOR PUBLIC HEALTH GENOMICS

PRIORITIES FOR PUBLIC HEALTH GENOMICS - PowerPoint Presentation

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PRIORITIES FOR PUBLIC HEALTH GENOMICS - PPT Presentation

20122017 A Public Health Stakeholder Consultation CoAuthors Toby Citrin JD tcitrinumichedu Center for Public Health and Community Genomics Stephen M Modell MD MS modumichedu ID: 778009

public health community genomics health public genomics community research genetic report cdc screening evidence ophg education committee planning genetics

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Slide1

PRIORITIES FOR PUBLIC HEALTH GENOMICS2012-2017

A Public Health Stakeholder Consultation

Slide2

Co-Authors

Toby

Citrin

, JD

tcitrin@umich.edu

Center for Public Health and Community Genomics

Stephen M.

Modell

, MD, MS

mod@umich.edu

Center for Public Health and Community Genomics

James O’Leary, BS

Genetic Alliance

Slide3

Presenter Disclosures

The following personal financial relationships with commercial interests relevant to this presentation existed during the past 12 months:

No Relationships to Disclose

Slide4

Our Assignment from CDC/OPHGApril-December 2012

Center for Public Health & Community Genomics

Consult stakeholders from public health community (academe, practice and community) on the future of public health genomics in the next five years

Collect, categorize, analyze input

Report findings at a wrap-up conference and in a written report

Genetic Alliance

Convene and organize the wrap-up conference

Slide5

Planning Committee

Academe

Karen Edwards

Sharon Kardia

Barbara Burns McGrath

Sara Shostak

Practice

Sylvia Au

Suzanne Cupal

Deb Duquette

Karen Greendale

Slide6

Planning Committee (Cont’d)

Community

Winona Hollins-Hauge

Imogene Wiggs

Ex Officio

Ella Greene-Moton (community liaison)

Dean Hosgood (APHA Genomics Forum)

Slide7

Center Staff

Toby

Citrin

Judy

Daltuva

Nora

Isack

Megan

Knaus

Sally Meyer

Stephen Modell

Tevah

Platt

Slide8

Slide9

RFI Responses

62 responses

Site for review of responses:

http://www.regulations.gov/#!

docketDetail;dct=FR+PR+N+O+SR+PS;rpp=10;po=0;D=CDC-2011-0008

Spreadsheet and summaries in background materials of written report

Slide10

Interviews (9)

Practice

Jean

Chabut

Maxine Hayes

Stephen

Teutsch

Deborah Klein Walker

Academe

Wylie Burke

Kim

Kaphingst

Chris

Kuzawa

Ken Olden

Community:

Chickezie

Maduka

Slide11

Informal Discussions (3)

National Community Committee – Special Interest Group on Genomics

Public Health Practice

Genetic Alliance Annual Meeting – “breakfast discussion”

Slide12

Process Involved

Selection of Planning Committee

Themes identified from literature

RFI data organized into Word tables and mapped on

Nvivo

Planning

Cmte

. summary data review

Topics areas and sub-themes refined

Data organized into recommendations, then refined after Bethesda meeting

Compilation of final report

Slide13

Literature Review

Workshops – Conferences – Reports - Program Reviews & Strategic Plans

Articles on the Future of Public Health Genomics

Articles on Stakeholder Consultation

Slide14

Other Studies; Reports

Healthy People 2020

CDC/OPHG 10

th

Year Report (2008)

HRSA Strategic Plan

NHGRI Strategic Plan

IOM Roundtable on Translating Genomic-based Research for Health

GAPPNet

Public Health Genomics Conference (2010)

SACGHS Education & Training Report (2011)

NHGRI Genomic Literacy Conference (11/2011)

Slide15

Procedural Strengths

Preliminary work already done by CDC Office of Public Health Genomics

Combination of federal RFI and University expertise allowed for quick turn-around

Knowledgeable Planning Committee advised on both general (e.g., frameworks) and specific (e.g., structuring of meetings) items

Umbrella community and genetics advocacy organizations aided in recruitment and information gathering

Slide16

Procedural Weaknesses

Federal restriction to 9 key informant interviews

Scope of the project limited the number of assessment avenues. Wiki had to be deferred.

Short time window influenced information collation techniques used.

Slide17

The ContextPast, Promise and Potential

Progress in specific interventions, e.g.:

Newborn Screening

BRCA and Lynch Syndrome testing

Sudden cardiac death

We’re a “half-way technology” needing translation, evidence and guidelines

Near unanimous agreement by “insiders” on broader promise of public health genomics

Lack of understanding or appreciation by “outsiders” of potential value of genomics to all of public health

Slide18

What We Learned

Slide19

Education

Slide20

What We LearnedEducation -Health Literacy -

Professional Training

Need for education of

the workforce (See SACGHS Report)

The public (“we’re still

genomically

illiterate”)

K-12

policy makers

Slide21

What We LearnedHealth Applications:

Chronic Disease – Family Health History

Increased emphasis on family history

Utilization by health depts. for risk identification and early implementation of preventive measures

Integration with EMRs – bridge between public health and medicine

Need for validation, integration, marketing

Slide22

Research

Slide23

What We LearnedResearch: Translational – Impact on

Health Outcomes

Research base for decisions on screening

Cost-effectiveness of genetic technologies (e.g., family history)

“Research [providing]

evidence that

the segmentation

of populations by genomic characteristics

would…achieve

greater effectiveness

and efficiency

across a range of public health interventions, especially in the fields of obesity, diabetes, stroke, cancer and heart disease, and

in neurodegenerative

disorders

.” – Ron

Zimmern

Slide24

What We Learned

Research: Translational – Impact on

Health Outcomes (Continued)

“…public

health genomics demands that we understand—and address—how unequally distributed exposures, resources, and other factors outside the body enter into molecular processes to shape health and illness within and across populations

.” – Sara

Shostak

Slide25

What We Learned

Research – Infrastructure and Focus

Integration of data sets/registries/tissue banks for research

Database cataloguing genetics, physical and social environment, determinants of health

Research focus toward public health goals and

methods

Role of CDC/OPHG – warehousing, guidance; “ushering” through the translation process

Slide26

Slide27

What We LearnedAssurance – Evidence Base

Systems providing information on validity and utility of genetic tests

e.g., EGAPP but not as slow

OPHG role as trusted source of evidence

“Leverage electronic healthcare infrastructure to achieve several goals: outcomes research, quality improvement, decision support.”

RFI Response

Slide28

Policy Development

Slide29

What We LearnedPolicy Development

Population level genetic screening

Utilization of family health history

FDA oversight of genetic tests

Advisory panel on multiplex screening

Regulation of direct-to-consumer testing

Slide30

Funding

Slide31

What We LearnedFunding

Support for state-level utilization of genomics professionals

Support for integration of genomics throughout public health practice

Funding of gene x environment research bridging between medicine and public health

Funding CBPR utilizing genomic approaches

Funding to assure equal access to genetic testing

Slide32

Collaborations - Partnerships

Slide33

What We LearnedCrosscutting:Collaborations - Partnerships

Personalized medicine advisory board within OPHG

NIH, AHRQ, CDC, CMS collaboration on evidence-based approaches

State level: Chronic disease, labs, MCH and NBS collaboration

Slide34

What We Learned

Crosscutting:

Collaborations – Partnerships (Cont’d)

Schools of Public Health with State Health Departments

Public-Private (e.g., with DTC companies)

Transdisciplinary

research teams (genetics, social, behavioral)

Enhanced stakeholder engagement, coordination and leadership

Slide35

Role of CDC/OPHG in Furthering Collaborations and Partnerships

Convener, e.g.,

with PRCs; chronic disease programs

Fostering interdisciplinary research

Advocate

Liaison with APHA Genomics Forum

Need for Advisory Group of stakeholders

Slide36

Frameworks for Organization

Core Functions (IOM “Future” 1988)

From Genes to Public Health (

Khoury

, AJPH, 1996)

Core Functions & Essential Services

Public Health in America – 1994

ASTHO - 2001)

Ecological View (IOM “Future” 2002)

Strengthen all sectors of public health

Slide37

Health DisparitiesCommunity Engagement

Slide38

What We LearnedHealth Disparities

Community Engagement

Gene x Environment – Epigenetic Research focused on health disparities

Community-Based Participatory Research incorporating genomics (e.g. by PRC’s)

“continue

to seek out [the grassroots voice of the community], embracing the idea that community lies at the heart of public health

….”

– Ella Greene-

Moton

Slide39

Priorities ConferenceSeptember 14, 2011

Over 70 leaders in public health genomics

Academe, public health, health care, community

Slide40

Priorities ConferenceOverarching Objectives

Improve public education about genetics through community engagement

Continue working on issues related to evidence development

Take a bottom-up approach to technology development

Slide41

Priorities ConferenceOverarching Objectives

Embed genetics into all aspects of healthcare

Expand public health screening programs that utilize genetic information

Relates to cascade screening recommendations in earlier presentation by Scott Bowen, et al

Slide42

Summary

PH Genomics has already achieved an impressive track record in addressing less common diseases and has demonstrated its significant potential to advance all areas of public health

Currently available genetic tools still need to be embraced by public health (e.g., those described by Scott Bowen, et al, earlier in this session)

Realizing the future potential of PH genomics will require

Leadership and a common vision

Collaboration among currently separate groups

Infrastructure and education

Advocacy to secure resources and policies

Slide43

Written Report – email:tcitrin@umich.edu