4th National Conference on Genomics and Public Health


Overview

The 4th National Conference on Genomics and Public Health, Using Genomic Information to Improve Health Now and in the Future, was a three-day event that highlighted best practices in public health genomics today while preparing for the future.

The conference, held December 8-10, 2010, featured keynote presentations by leaders in the fields of genomics and public health, interactive plenary and break-out sessions, scientific poster exhibits on genomics research and public health practice, and evening events for networking.

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Purpose

The goals of the event were to bring together multi-disciplinary professionals from national, state and global organizations to:

  1. Learn more about the use of genetics and genomics for improving public health interventions to prevent and control chronic, pediatric, infectious, environmental, and occupational diseases, and provide quality genetic services across the lifespan
  2. Understand the landscape of genomic applications as they are being used now and best practices to follow
  3. Learn about new scientific technologies and methods that can be implemented now or in the near future
  4. Understand the implications of the globalization of public health and genomics
  5. Determine the best steps to take in forging the direction of our work in the next five to 10 years

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Agenda

The conference sessions detailed genomics and public health programs, projects, research, and activities in the following tracks:

  • Track 1 - Practice: use of evidence-based genomic knowledge and applications (e.g., genetic and genomic testing, technology, and family health history) in public education, health promotion across the lifespan, screening, health service delivery, and community partnerships
  • Track 2 - Knowledge synthesis: efforts to synthesize basic clinical and population sciences in genomics to provide evidence to inform research, practice, public policy, interventions, and quality assessment
  • Track 3 - Communication: communication, dissemination, and decision support approaches involving mass media, the Internet, or social networks, with the aim to improve usefulness of genomic knowledge
  • Track 4 - Global health: global partnerships and issues in genomics
  • Track 5 - Preparedness and response: use of genomics in preparedness and response activities to address infectious, environmental, and bio-terrorism threats
  • Track 6 - New developments: emerging genomic discoveries and implications for research, practice, and policy

Public Health Genomics Today: Applying Available Tools in Public Health Practice
Wednesday, December 8 Topic
8:00 a.m. - 8:45 a.m. Welcoming Remarks
Kathy Hudson, Ph.D.
National Institutes of Health
8:45 a.m. - 9:00 a.m. Public Health Genomics: A Historical Perspective
Michele Lloyd-Puryear, M.D., Ph.D.
Health Resources and Services Administration
9:00 a.m. - 9:15 a.m. Planning Committee Welcome and Meeting Logistics
Albert Terrillion, Dr.P.H., C.P.H., C.H.E.S.
Association of State and Territorial Health Officials
Plenary Session 1: Considering Issues for Public Health Practice Raised by Available Tools
Moderator: Colleen McBride, Ph.D.
9:15 a.m. - 9:45 a.m. Genomics in Medicine Across the Lifespan: Present and Future
Bruce R. Korf, M.D., Ph.D.
University of Alabama Birmingham
9:45 a.m. - 10:15 a.m. The Public Health Genomics Translation Gap: What We Don't Have & Why it Matters
Marc S. Williams, M.D., F.A.A.P., F.A.C.M.G.
Intermountain Healthcare
10:30 a.m. - 12:00 p.m. Stakeholder Perspectives Panel
Wylie Burke, M.D., Ph.D.
University of Washington School of Public Health

Bruce D. Blumberg, M.D.
Kaiser Permanente

Tracy L. Trotter, M.D., F.A.A.P.
San Ramon Valley Primary Care

Sharon F. Terry, M.A.
Genetic Alliance

Amy M. Miller, Ph.D.
Personalized Medicine Coalition
12:00 p.m. - 1:30 p.m. Lunch Keynote: Challenges and Opportunities for Evidence-Based Genetics Practice
Reed V. Tuckson, M.D., F.A.C.P.
United HealthCare
Breakout Session 1: Considering Issues for Public Health Practice Raised by Available Tools

Breakout Session 1A: Fully Integrating Family History into Practice: Overcoming Challenges
Moderator: W. Gregory Feero, M.D., Ph.D.

1:45 p.m. Examining discrepancies in disease diagnoses within Mexican-origin families
Andrea Goergen, M.H.S.
2:10 p.m. Family history tools in primary care: does one size fit all?
Brenda Wilson, M.B., Ch.B., M.Sc.
2:35 p.m. Family history validation in the Personalized Medicine Research Project
Deanna Cross, Ph.D.
3:00 p.m. Explaining inaccuracies in family history reporting: do relatives know that they are ill?
A. Cecile J.W. Janssens, Ph.D.
3:25 p.m. Considerations for sharing electronic genomic information among family members
Ruth Gaare Bernheim, J.D., M.P.H.
Breakout Session 1B: Amassing the Evidence Needed to Translate Discoveries
Moderator: Ralph Coates, Ph.D.
1:45 p.m. Priorities in genomic applications in practice and prevention: an evidence-based approach to moving forward with translation and implementation of genomic technologies in clinical and public health practice
Michael Marrone, M.P.H.
2:10 p.m. Genetics for Early Disease Detection and Intervention (GEDDI)
James O'Leary, B.S.
2:35 p.m. Creating a Clinical Risk Assessment Tool to Promote Cancer Genomics
Debra Duquette, M.S.
3:00 p.m. Evaluating the Evidence for Genetic Tests: Improving the Process
Margaret Piper, Ph.D., M.P.H.
3:25 p.m. Using evidence to support policy recommendations about heritable disorders
Alex R. Kemper, M.D., M.P.H., M.S. and Sharon F. Terry, M.A.
Breakout Session 1C: Genomics Challenges for Behavioral Risk Communication
Moderator: Celeste M. Condit, Ph.D.
1:45 p.m. Analysis of the potential impact of genomic knowledge on smoking behaviors
Alicia Giordimaina, M.S.
2:10 p.m. Genetic information impacts bias and referrals for an obese virtual patient
Susan Persky, Ph.D.
2:35 p.m. Communicating genetic risk for colorectal cancer: Message considerations
Catharine Wang, Ph.D., M.Sc.
3:00 p.m. Predictors of uptake of gene environment risk assessment (GERA) testing
Michael Hall, M.D., M.S.
3:25 p.m. The Psychological Effects of Genetic Testing for the Risk of Weight Gain – A Vignette Study
Susanne Meisel, M.Sc.
Breakout Session 1D: Ethical, Legal and Social Challenges for "Big Science" Collaborations
Moderator: Jean McEwen, J.D., Ph.D.
1:45 p.m. Data-Sharing Code of Conduct for International Genomic Research
Bartha Maria Knoppers, Ph.D.
2:10 p.m. Confronting Real Time Ethical, Legal, and Social Issues in the eMERGE (Electronic Medical Records and Genomics) Consortium
Maureen Smith, M.S., C.G.C.
2:35 p.m. Managing Individual Research Results of Health Importance
Brian Van Ness, Ph.D.
3:00 p.m. Perspectives of Genetic Researchers and IRB Professionals toward Genetic Research Review
Amy Lemke, M.S., Ph.D.
3:25 p.m. Return of Individual Research Results from Genome-wide Association Studies
Wylie Burke, M.D., Ph.D.
Breakout Session 1E: Direct Marketing of Genomic Applications
Moderator: Sheri D. Schully, Ph.D.
1:45 p.m. Awareness and use of direct-to-consumer genetic tests: Findings from the 2007 HINTS
Tanya Agurs-Collins, Ph.D.
2:10 p.m. Public understanding and reactions to personalized genomic risk information
Barbara Bernhardt, M.S.
2:35 p.m. Primary care patient decision-making about direct-to-consumer personal genome testing
Katherine Wasson, Ph.D., M.P.H.
3:00 p.m. Understanding of multiplex genetic susceptibility test feedback
Kimberly Kaphingst, Sc.D.
3:25 p.m. Physicians' Evaluation of Adding Predictive Genomic Risk Assessment (PGRA) to Standard Care in a Preventive Health Setting
Barbara Koenig, Ph.D.
Plenary Session 2: The Era of Global Genomics
Moderator: Muin Khoury, M.D., Ph.D.
4:15 p.m. - 4:45 p.m. Human Genomics and Public Health Preparedness
Nicole F. Dowling, Ph.D.
Office of Public Health Genomics, CDC
4:45 p.m. - 5:15 p.m. Some Thoughts on the Future of Genomics and its Impact on Public Health Practice: an International Perspective
Ron Zimmern, M.A., F.R.C.P., F.F.P.H.M.
PHG Foundation
5:30 p.m. - 7:00 p.m. Poster Session 1 and Reception

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Anticipating Forecast Advances in Genomics and Implications for Public Health
Are We Where We Want to Be?
Thursday, December 9 Topic
Plenary Session 3: The Road to Implementation
Moderator: Sara Copeland, M.D.
8:30 a.m. - 9:00 a.m. How Much Evidence Do We Need for Genomics Application?
David Veenstra, PharmD, Ph.D.
University of Washington
9:00 a.m. - 9:30 a.m. How Can We Get the Clinical and Public Health Work Force Ready? The Talent Required
Barbara Burns McGrath, R.N., Ph.D.
University of Washington, School of Nursing
9:45 a.m. - 10:15 a.m. Genetic Service Delivery: Infrastructure, Assessment, Information
Celia I. Kaye, M.D., Ph.D.
University of Colorado School of Medicine
University of Texas Health Science Center at San Antonio
10:15 a.m. - 11:00 a.m. Discussion Panel of Speakers
Breakout Session 2: The Road to Implementation

Breakout Session 2A: Telemedicine: Expanding the Traditional Counseling Model
Moderator: Catherine Wicklund, M.S., C.G.C.

11:00 a.m. "Copy Number Variant" Genomics Clinic at the Ohio State Medical Center
Kandamurugu Manickam, M.D.
11:15 a.m. Telegenetics – Use of Technology to Increase Access to Genetic Services and Education
Sylvia Mann Au, M.S.
11:30 a.m. An Efficient Recruitment Strategy for Identifying Low-Income Women at High Risk for Hereditary Breast Cancer
Galen Joseph, Ph.D.
11:45 a.m. Genetics Blogs: Are Credibility Indicators Associated with Influence?
Laura Wagner, B.A.
12:00 p.m. A novel approach for genetic services: telephone-based genetic counseling
Kelle Steenblock, M.S., C.G.C.
12:15 p.m. Question and Answer Session
Breakout Session 2B: Current Issues in Newborn Screening
Moderator: Sara Copeland, M.D.
11:00 a.m. Newborn Screening Advisory Committees: Challenges to Policy Developments on Residual Dried Blood Spots
Rebecca Anderson, R.N., B.S.
11:15 a.m. Policies regarding the retention and use of residual dried blood spots
Michele Lloyd-Puryear, M.D., Ph.D.
11:30 a.m. Implementation of Parental Consent for Residual Dried Blood Spot Research
Janice Bach, M.S.
11:45 a.m. Genetics in Newborn Hearing Screening: A Multidisciplinary Translation into Practice
Sarah Scollon, M.S., C.G.C
12:00 p.m. A cost analysis and planning model for newborn screening program expansion
Michael Petros, M.S., M.P.H.
12:15 p.m. Question and Answer Session
Breakout Session 2C: Encouraging Genetic Risk Communication in Social Networks
Moderator: Laura M. Koehly, Ph.D.
11:00 a.m. Motivating risk communication and screening encouragement in Mexican origin families
Dirk Hendrik de Heer, Ph.D., M.P.H., M.S., B.A.
11:15 a.m. The clinical utility of web-based familial risk information for diabetes prevention: do people adopt risk-reducing behaviours?
Lidewij Henneman, Ph.D.
11:30 a.m. Development of the Cancer in the Family Decision Aid
Linda Squiers, Ph.D.
11:45 a.m. Navigating low income, underserved women to breast cancer risk assessment
McKane Sharff, B.A.
12:00 p.m. Integrating electronic family history taking into primary care: Patient and provider perceptions
Lori Orlando, M.D., M.H.S.
12:15 p.m. Question and Answer Session
Breakout Session 2D: Issues in Global Health Applications of Genomics
Moderator: Nicole F. Dowling, Ph.D.
11:00 a.m. Genomic Testing Support in an Adherence Program for Patients with HIV/AIDS
Lon Castle, M.D.
11:20 a.m. Are pharmacogenomics drugs a necessary luxury for global public health?
Catherine Olivier, M.Sc.
11:40 a.m. Genomic Studies in US minority populations: Implications for research, health and public policy
Emmanuel Peprah, Ph.D.
12:00 p.m. Should newborn screening be introduced for Pompe disease? Valuation of benefits and risks by the general public in the Netherlands
Stephanie Weinreich, Ph.D.
12:20 p.m. Question and Answer Session
Breakout Session 2E: Hereditary Breast and Ovarian Cancer: Public Health Implications of Emerging Genomic Medicine
Moderator: Donald W. Hadley, M.S., C.G.C.
11:00 a.m. Evaluation and Promotion of BRCA Best Practices among Michigan Health Plans
Debra Duquette, M.S.
11:15 a.m. Health Communication Constraints: Families with Hereditary Breast Ovarian Cancer Susceptibility Syndrome (HBOC)
June Peters, M.S.
11:30 a.m. Facilitation of CYP450 2D6 Genotyping in Patients Prescribed Tamoxifen
William Dreitlein, Pharm.D.
11:45 a.m. Prevalence of women in a large HMO with an increased risk family history consistent with the 2005 USPSTF recommendation for hereditary breast/ovarian cancer genetics referral
Cecelia Bellcross, Ph.D., M.S.
12:00 p.m. Genetic Testing Patents: Operationalizing Legal Uncertainty
Jorge Contreras, J.D.
12:15 p.m. Question and Answer Session
Plenary Session 4: Dissemination of Knowledge: Roles and Responsibilities
Moderator: James O'Leary
2:00 p.m. - 2:30 p.m. Responsible Genetic Testing: What Do We Need?
Joan A. Scott, M.S., C.G.C.
National Coalition for Health Professional Education in Genetics
2:30 p.m. - 3:00 p.m. Opt-In/Opt-Out
Sharon L.R. Kardia, Ph.D.
University of Michigan, School of Public Health
3:00 p.m. - 3:45 p.m. Journalists', Scientists', and the Public's Responsibility in Disseminating Genetic Information: Who's Responsible for Hype?
Mary Carmichael
Newsweek

Timothy Caulfield, LL.M.
University of AlbertaM

Celeste M. Condit, Ph.D.
University of Georgia
Breakout Session 3: Dissemination of Knowledge, Roles and Responsibilities

Breakout Session 3A: Genomic Translation in Cancer: the Clinic and Beyond
Moderator: Elizabeth M. Gillanders, Ph.D.

4:00 p.m. Intrafamilial communication of genetic risk for hereditary breast cancer
Lee Black, J.D., L.L.M.
4:15 p.m. Family History of Colorectal Cancer: A Predictor of Clinicians' Preventive Recommendations and Patient Behavior
Amy Zlot, M.P.H.
4:30 p.m. Initial Outcomes Following Genetic Education for Colon Cancer SNP Testing
Rachel Nusbaum, M.S., C.G.C.
4:45 p.m. Increasing the proportion of women counseled for BRCA1/2 testing
Ralph Coates, Ph.D.
5:00 p.m. Bidirectional Reporting of Michigan Cancer Registry Data: A Pilot Project
Beth Anderson, M.P.H.
5:15 p.m. Question and Answer Session
Breakout Session 3B: Community Outreach Role in Translating Genomic Discoveries
Moderator: Maureen E. Smith, M.S., C.G.C.
4:00 p.m. Community Engagement in Biobanking: Experiences from the eMERGE Network
Amy Lemke, M.S., Ph.D.
4:15 p.m. Engaging Communities in Genomics Education, Research, Practice and Policy
Toby Citrin, J.D.
4:30 p.m. Citizens' views about the use of stored newborn screening samples: A public engagement study
Yvonne Bombard, Ph.D.
4:45 p.m. Understanding African American participation in cancer genetics research
Jasmine McDonald, Ph.D.
5:00 p.m. Town Hall Responses to Informed Consent Models for Public Health Biobanks
Daniel Thiel, B.A., M.A.
5:15 p.m. Question and Answer Session
Breakout Session 3C: Genomic Testing of Minors: Implications for Primary Prevention
Moderator: Cecelia A. Bellcross, Ph.D., M.S., C.G.C.
4:00 p.m. Disclosure of parents' multiplex genetic test results to young children
Kenneth Tercyak, Ph.D.
4:15 p.m. The Impact of Uncertain Results of Cytogenomic Micro-Array Testing for Children
Marian Reiff, Ph.D.
4:30 p.m. A Comprehensive Hemoglobinopathy Surveillance System as Statewide Long-term Follow-up across Life Span - Michigan Experience
Violanda Grigorescu, M.D., M.S.P.H
4:45 p.m. Swabbing Students: In Search of a Legal Framework for Academic DNA Testing
Shawneequa Callier, M.A., J.D.
5:00 p.m. Peds BioVU: Including Pediatric Samples in a Non-Human Subjects Biobank
Kyle Brothers, M.D.
5:15 p.m. Question and Answer Session
Breakout Session 3D: Personalized Genomics
Moderator: Saskia Sanderson, Ph.D.
4:00 p.m. Incidental Findings from Whole-Genome Cytogenomic Arrays in the EMR
Andrew Faucett, M.S.
4:15 p.m. Whole Genome Sequencing in the Clinical Laboratory
Tina Hambuch, Ph.D.
4:30 p.m. Influence of Personal Genomic Results on the Use of Medical Tests and Procedures
Erynn Gordon, M.S.
4:45 p.m. Motivators for participation in a whole genome sequencing study
Flavia Facio, M.S.
5:00 p.m. Do people distinguish between diseases when offered multiplex testing?
Barbara Biesecker, M.S.
5:15 p.m. Question and Answer Session
Breakout Session 3E: Preparing Public Health Work Force for Genomics: Future Directions
Moderator: Vence L. Bonham, Jr., J.D.
4:00 p.m. Promoting critical discourse regarding genetics, health and public policy in science education
Briana Mezuk, Ph.D.
4:15 p.m. Survey of State Genetics Coordinators: Update on Public Health Genetics over the Past Decade
Sylvia Mann Au, M.S.
4:30 p.m. Process for Cancer Risk Assessment & Management: Family & Genomic Health History
Mary Ropka, Ph.D., R.N.
4:45 p.m. The Northwestern Genetic Counseling Internship: A Method to Educate Individuals about the Genetic Counseling Profession
Tara Scriver, B.Sc.
5:00 p.m. Physicians' utilization of genetic services and tests in clinical practice
Dawn Wayman, B.S., M.H.S.
5:15 p.m. Question and Answer Session
5:30 p.m. - 7:00 p.m. Poster Session 2 and Reception

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Horizon Scanning: Anticipating and Preparing for the Future
Where is Genomics Most Likely to Influence Public Health in 2020?
Friday, December 10 Topic
Plenary Session 5: Horizon Scanning: Anticipating and Preparing for the Future
Moderator: Kay Wanke, Ph.D., M.P.H.
8:30 a.m. - 9:00 a.m. Advances in Epigenetics: Implications for Public Health
Christopher W. Kuzawa, Ph.D.
Northwestern University
9:00 a.m. - 9:30 a.m. Genetics and Health Behavior: Current Knowledge and Future Challenges
Angela Bryan, Ph.D.
University of New Mexico
9:30 a.m. - 10:00 a.m. Implications of Internet Availability of Genomic Information for Public Health Practice
Bradford Hesse, Ph.D.
National Cancer Institute
10:00 a.m. - 10:30 a.m. Coping with Genomic Information: Challenges and Solutions
James P. Evans, M.D., Ph.D.
University of North Carolina, School of Medicine
10:45 a.m. - 12:00 p.m. Closing Session: Visioning the Future of Genomics: Opportunities and Implications
Moderator: Sharon F. Terry, M.A.

Closing Session Panel:
Christopher W. Kuzawa, Ph.D.
Northwestern University

Angela Bryan, Ph.D.
University of New Mexico

Bradford Hesse, Ph.D.
National Cancer Institute

James P. Evans, M.D., Ph.D.
University of North Carolina, School of Medicine

Wylie Burke, M.D., Ph.D.
University of Washington School of Public Health

Bruce D. Blumberg, M.D.
Kaiser Permanente

Tracy L. Trotter, M.D., F.A.A.P.
San Ramon Valley Primary Care

Sharon F. Terry, M.A.
Genetic Alliance

Amy M. Miller, Ph.D.
Personalized Medicine Coalition

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Organizing Committee

Co-Chairs:

  • Scott Bowen, OPHG, CDC
  • Colleen McBride, NHGRI, NIH
  • Sheri Schully, NCI, NIH

Committee Members:

  • Stephen Groft, ORD, NIH
  • James Hanson, NICHD, NIH
  • Muin J. Khoury, OPHG, CDC
  • Michele Lloyd-Puryear, HRSA
  • Cynthia Moore, NCBDDD, CDC
  • James O'Leary, Genetic Alliance
  • Jody Platt, APHA Genomics Forum
  • Gurvaneet Randhawa, AHRQ
  • Jeanette St. Pierre, OPHG, CDC
  • Albert Terrillion, ASTHO
  • Kay Wanke, OBSSR, NIH
  • Michael Watson, ACMG
  • Cathy Wicklund, Northwestern University, NSGC

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Contact

For further information or questions about the Conference, contact Sheri Schully, Ph.D., Knowledge Integration Team Lead, Office of the Associate Director, Epidemiology and Genomics Research Program.

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