National Academies Press: OpenBook
« Previous: Acronyms
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.
×

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.)
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.
×
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
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.
×
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
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.
×
  • 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
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.
×
Page 75
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.
×
Page 76
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.
×
Page 77
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.
×
Page 78
Next: Appendix B: List of Registrants »
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 Get This Book
×
Buy Paperback | $40.00 Buy Ebook | $31.99
MyNAP members save 10% online.
Login or Register to save!
Download Free PDF

Population surveys traditionally collect information from respondents about their circumstances, behaviors, attitudes, and other characteristics. In recent years, many surveys have been collecting not only questionnaire answers, but also biologic specimens such as blood samples, saliva, and buccal swabs, from which a respondent's DNA can be ascertained along with other biomarkers (e.g., the level of a certain protein in the blood). The National Health and Nutrition Examination Survey (NHANES), sponsored by the National Center for Health Statistics (NCHS), has been collecting and storing genetic specimens since 1991, and other surveys, such as the Health and Retirement Study (HRS) funded by the National Institute on Aging, have followed suit. In order to give their informed consent to participate in a survey, respondents need to know the disposition and use of their data. Will their data be used for one research project and then destroyed, or will they be archived for secondary use? Sponsors of repeated cross-sectional surveys, such as NHANES, and of longitudinal surveys that follow panels of individuals over time, such as HRS, generally want to retain data for a wide range of secondary uses, many of which are not explicitly foreseen at the time of data collection. They typically inform respondents that their data will be stored in a secure manner and may be provided to researchers with suitable protections against individual identification.

The addition of biologic specimens to a survey adds complications for storing, protecting, and providing access to such data and measurements made from them. There are also questions of whether, when, and for which biologic measurements the results should be reported back to individual respondents. Recently, the cost of full genomic sequencing has plummeted, and research findings are beginning to accumulate that bear up under replication and that potentially have clinical implications for a respondent. For example, knowing that one possesses a certain gene or gene sequence might suggest that one should seek a certain kind of treatment or genetic counseling or inform one's blood relatives. Biomedical research studies, in which participants are asked to donate tissues for genetic studies and are usually told that they will not be contacted with any results, are increasingly confronting the issue of when and which DNA results to return to participants.

Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey is the summary of a workshop convened in February 2013 by the Committee on National Statistics in the Division of Behavioral and Social Sciences and Education of the National Research Council. This report considers how population surveys, in particular NHANES, should implement the reporting of results from genomic research using stored specimens and address informed consent for future data collection as well as for the use of banked specimens covered by prior informed consent agreements. The report will be of interest to survey organizations that include or contemplate including the collection of biologic specimens in population surveys for storing for genetic research. The issues involved are important for advancing social, behavioral, and biomedical knowledge while appropriately respecting and protecting individual survey respondents.

  1. ×

    Welcome to OpenBook!

    You're looking at OpenBook, NAP.edu's online reading room since 1999. Based on feedback from you, our users, we've made some improvements that make it easier than ever to read thousands of publications on our website.

    Do you want to take a quick tour of the OpenBook's features?

    No Thanks Take a Tour »
  2. ×

    Show this book's table of contents, where you can jump to any chapter by name.

    « Back Next »
  3. ×

    ...or use these buttons to go back to the previous chapter or skip to the next one.

    « Back Next »
  4. ×

    Jump up to the previous page or down to the next one. Also, you can type in a page number and press Enter to go directly to that page in the book.

    « Back Next »
  5. ×

    Switch between the Original Pages, where you can read the report as it appeared in print, and Text Pages for the web version, where you can highlight and search the text.

    « Back Next »
  6. ×

    To search the entire text of this book, type in your search term here and press Enter.

    « Back Next »
  7. ×

    Share a link to this book page on your preferred social network or via email.

    « Back Next »
  8. ×

    View our suggested citation for this chapter.

    « Back Next »
  9. ×

    Ready to take your reading offline? Click here to buy this book in print or download it as a free PDF, if available.

    « Back Next »
Stay Connected!