Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary (2014)

Chapter: Appendix A: Workshop Agenda

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Suggested Citation: "Appendix A: Workshop Agenda." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
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Appendix A

Workshop Agenda

Guidelines for Returning Individual Results from Genome Research
Using Population-Based Banked Specimens

National Academy of Sciences
2101 Constitution Ave, NW
Washington, DC
Lecture Room

February 10-11, 2014

Day One–February 10

8:15-8:45 am Registration (East Court)
Continental breakfast available from 8:15 am
 
8:45-9:00 am Welcome and Opening Remarks
  • Wylie Burke, University of Washington, Workshop Chair
  • Connie Citro, NRC Committee on National Statistics
  • Virginia Cain, National Center for Health Statistics
9:00-10:00 am Genomics in Population-Based Data Collection: The Example of the National Health and Nutrition Examination Survey (NHANES)
Session chair: Wylie Burke, University of Washington
  • Overview of NHANES (30 min.)—Kathryn Porter, National Center for Health Statistics
  • Discussion (30 min.)
Page 76 Cite Bookmark
Suggested Citation: "Appendix A: Workshop Agenda." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
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10:00-11:00 am Perspectives on Returning Genome-Based Research Results
Session chair: Jeffrey Botkin, University of Utah
  • Role-based obligations (15 min.)—Henry Richardson, Georgetown University
  • The case for a stringent approach to returning results (15 min.)—Steven Joffe, University of Pennsylvania
  • The case for broad return (15 min.)—Susan Wolf, University of Minnesota
  • Discussion (15 min.)
11:00-11:15 am Break
11:15 am-12:30 pm Framing the Discussion
Session chair: Ellen Clayton, Vanderbilt University
  • The evolution of genomic technology and clinical utility (20 min.)—Gail Jarvik, University of Washington
  • Ethical frameworks (20 min.)—Benjamin Berkman, National Human Genome Research Institute
  • Discussion (35 min.)
 
12:30-1:15 pm Lunch
 
1:15-3:15 pm How Is NHANES Similar to/Different from Other Population-Based Studies?
Session chair: Eileen Crimmins, University of Southern California
  • National Longitudinal Study of Adolescent Health (Add Health) (15 min.)—Carolyn Halpern, University of North Carolina
  • Health and Retirement Study (15 min.)—David Weir, University of Michigan
  • National Social Life, Health, and Aging Project (15 min.)—Martha McClintock, University of Chicago
  • Wisconsin Longitudinal Study (15 min.)—Robert Hauser, National Research Council
  • National Children’s Study (15 min.)—John Moye, National Institute of Child Health & Human Development
  • Illumina (15 min.)—Tina Hambuch, Illumina
  • Discussion (30 min.)
3:15-3:30 pm Break
Page 77 Cite Bookmark
Suggested Citation: "Appendix A: Workshop Agenda." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
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3:30-5:00 pm Issues for NHANES
Session chair: Adam Berger, Institute of Medicine
  • The scientific value of incorporating genomic data collection into NHANES (20 min.)—Sharon Kardia, University of Michigan
  • Panel on “Determining what data are returnable” (30 min.)
    1. Marc Williams, Geisinger Genomic Medicine Institute
    2. Muin Khoury, Centers for Disease Control and Prevention
  • Survey participants’ attitudes and preferences (20 min.)—Laura Beskow, Duke University
  • Discussion
 
6:30 pm Dinner (Steering Committee and Invited Speakers)
 
Day Two–February 11
 
8:30-9:00 am Registration (East Court)
Continental breakfast available from 8:30 am
 
9:00-10:45 am The Logistics of Returning Genomic Results from NHANES
Session chair: Wylie Burke, University of Washington
  • Kathryn Porter, National Center for Health Statistics (20 min.)
  • Retrospective versus prospective samples (20 min.)—Kelly Edwards, University of Washington
  • Practical issues/aspects of returning results (20 min.)—Barbara Biesecker, National Human Genome Research Institute
  • Discussion (45 min.)
 
10:45-11:00 am Break
 
11:00 am-12:00 pm Special Considerations for Reporting of Results in NHANES and Similar Surveys
Session chair: Les Biesecker, National Human Genome Research Institute
  • Statistical agency considerations in releasing DNA results (15 min.)—Jennifer Madans, National Center for Health Statistics
Page 78 Cite Bookmark
Suggested Citation: "Appendix A: Workshop Agenda." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
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  • Genetic exceptionalism in NHANES? (15 min.)—Jeffrey Botkin, University of Utah
  • Discussion (30 min.)
 
12:00-1:00 pm Lunch
 
1:00-3:00 pm Summary of Presentations and Discussion
Session chair: Wylie Burke, University of Washington
  • Reports from Steering Committee members and selected speakers (10 min. each)
  • Group discussion
  • Wrap-up and next steps
 
3:00 pm Adjourn
Page 75 Cite Bookmark
Suggested Citation: "Appendix A: Workshop Agenda." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
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Page 76 Cite Bookmark
Suggested Citation: "Appendix A: Workshop Agenda." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
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Page 77 Cite Bookmark
Suggested Citation: "Appendix A: Workshop Agenda." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
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Page 78 Cite Bookmark
Suggested Citation: "Appendix A: Workshop Agenda." National Research Council. 2014. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18829.
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