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.
Purpose
The goals of the event were to bring together multi-disciplinary professionals from national, state and global organizations to:
- 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
- Understand the landscape of genomic applications as they are being used now and best practices to follow
- Learn about new scientific technologies and methods that can be implemented now or in the near future
- Understand the implications of the globalization of public health and genomics
- Determine the best steps to take in forging the direction of our work in the next five to 10 years
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
| Time | 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. Tracy L. Trotter, M.D., F.A.A.P. Sharon F. Terry, M.A. 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 |
| Time | 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 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 |
| Time | 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: Angela Bryan, Ph.D. Bradford Hesse, Ph.D. James P. Evans, M.D., Ph.D. Wylie Burke, M.D., Ph.D. Bruce D. Blumberg, M.D. Tracy L. Trotter, M.D., F.A.A.P. Sharon F. Terry, M.A. Personalized Medicine Coalition |
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
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.
