Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop (2023)
Chapter: Appendix D: Public-Facing Background Materials: Workshop Primer: Background and Context about the National Health and Nutrition Examination Survey (NHANES)
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Suggested Citation:
"Appendix D: Public-Facing Background Materials: Workshop Primer: Background and Context about the National Health and Nutrition Examination Survey (NHANES)." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press.
doi: 10.17226/27105.
Appendix D
Public-Facing Background Materials: Workshop Primer: Background and Context about the National Health and Nutrition Examination Survey (NHANES)
Created by: Workshop planning committee and staff
Document Purpose: To provide key information about the NHANES to inform the 2022 workshop on “Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the NHANES.” This document is not intended to be comprehensive. Readers who need additional information are encouraged to visit the NHANES website to find additional information (www.cdc.gov/nchs/nhanes).
ABOUT THE NHANES DATA COLLECTION1
- The NHANES program began in the early 1960s and is a continuous program that has a changing focus on a variety of health and nutrition measurements to meet emerging needs.
- This survey is cross sectional and there is no active tracking of participants following their participation in the survey.
- NHANES is a complex sample survey which involves “the identification [of] and data collection [based on] a sample of population units [e.g., individuals, institutions]”2
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1https://www.cdc.gov/nchs/nhanes/about_nhanes.htm
2 Saavedra, P. (2011). Complex sample surveys. In P. J. Lavrakas (Ed.) Encyclopedia of survey research methods. https://doi.org/10.4135/9781412963947; see also National Center for Health Statistics. (2020). National Health and Nutrition Examination Survey, 2015–2018: Sample design and estimation procedures. Vital and Health Statistics, 2(184). Centers for Disease Control and Prevention, U.S. Department of Health and Human Services. Saavedra, P. (2011). Complex sample surveys. In P. J. Lavrakas (Ed.) Encyclopedia of survey research methods. https://www.cdc.gov/nchs/data/series/sr_02/sr02-184-508.pdf
Suggested Citation:
"Appendix D: Public-Facing Background Materials: Workshop Primer: Background and Context about the National Health and Nutrition Examination Survey (NHANES)." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press.
doi: 10.17226/27105.
- The current survey examines a nationally representative sample of about 5,000 persons each year. These persons are located in counties across the country, 15 of which are visited each year.
- Oversampling of certain population subgroups is also done to increase the reliability and precision of health status indicator estimates for these particular subgroups.
- The NHANES interview includes demographic, socioeconomic, dietary, and health-related questions. The examination component consists of medical, dental, and physiological measurements, as well as laboratory tests administered by highly trained personnel.
- Findings from this survey are used to determine the prevalence of major diseases and risk factors for diseases. Data from this survey are used in epidemiological studies and health sciences research, which help develop sound public health policy, direct and design health programs and services, and expand the health knowledge for the nation.
REPORTING FINDINGS TO NHANES PARTICIPANTS3
- All survey participants receive a report of findings approximately 12–16 weeks after their participation in the main survey (household interview and to visit mobile examination) and this is generally the last contact NHANES initiates with survey participants.
- NHANES provides health measurement and test results to all participants who have completed at least one component of the health examination.
- For a NHANES test result to be reported, it must be “clinically actionable” for participant and/or medical provider.
- To be clinically actionable or reportable, the test result must either:
- Inform clinical decision-making
OR
- Inform participants so that precautions and/or changes to health behavior can be made
- Labs: Historically to be eligible for reporting to participants must be FDA approved and a Clinical Laboratory Improvement Amendments (CLIA)-certified test from CLIA-certified laboratory. (Also see “Laboratory Developed tests” in the Workshop Glossary.)
- NCHS has an in-house survey response team available to answer calls from sample participants regarding questions about test results from the Report of Finding System.
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3https://www.cdc.gov/nchs/data/bsc/nhanes_reports_of_findings_overview_for_bsc.pdf
Suggested Citation:
"Appendix D: Public-Facing Background Materials: Workshop Primer: Background and Context about the National Health and Nutrition Examination Survey (NHANES)." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press.
doi: 10.17226/27105.
INFORMED CONSENT4
- When NHANES last collected DNA (2011–2012), there was a separate informed consent
- DNA Specimens were collected in NHANES III, 1999–2002 and 2007–2012. Since 1999, this collection consists of adults only.
- Consent for Specimen Storage and Continuing Studies for DNA5
- NHANES currently has informed consent for two separate components6 as follows:
BIOSPECIMEN PROGRAM9
- Serum, Plasma, and Urine Specimens10
- DNA Specimens and Genetic Data Program11
- Access
- Specimens
- Proposal Process: Including ensuring that research does not generate clinically significant results (i.e., traditionally American College of Medical Genetics and Genomics for DNA specimens)
- Resulting data
- Public-use data are available on the NHANES website12
- To guarantee the confidentiality of the survey participants, Limited Access data13 are available in the NCHS’s Research Data Center.14 This includes Personally Identifiable Information (PII) and genetic data, indirect PII, and other sensitive data.
- Specimens
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4https://wwwn.cdc.gov/nchs/nhanes/continuousnhanes/documents.aspx?BeginYear=2011
5https://wwwn.cdc.gov/nchs/data/nhanes/2011-2012/documents/2011_dna_consent_english.pdf
6https://wwwn.cdc.gov/nchs/nhanes/continuousnhanes/documents.aspx?BeginYear=2019
7https://wwwn.cdc.gov/nchs/data/nhanes/2019-2020/documents/2019-Home-Interview-Consent-English-508.pdf
8https://wwwn.cdc.gov/nchs/data/nhanes/2019-2020/documents/2019-Specimen-Storage-and-Continuing-Studies-Consent-508.pdf
9https://www.cdc.gov/nchs/nhanes/biospecimens/biospecimens.htm
10https://www.cdc.gov/nchs/nhanes/biospecimens/serum_plasma_urine.htm
11https://www.cdc.gov/nchs/nhanes/biospecimens/dnaspecimens.htm
12https://wwwn.cdc.gov/nchs/nhanes/Default.aspx
13https://wwwn.cdc.gov/nchs/nhanes/search/datapage.aspx?Component=LimitedAccess&CycleBeginYear=2017
Suggested Citation:
"Appendix D: Public-Facing Background Materials: Workshop Primer: Background and Context about the National Health and Nutrition Examination Survey (NHANES)." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press.
doi: 10.17226/27105.
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Suggested Citation:
"Appendix D: Public-Facing Background Materials: Workshop Primer: Background and Context about the National Health and Nutrition Examination Survey (NHANES)." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press.
doi: 10.17226/27105.
Suggested Citation:
"Appendix D: Public-Facing Background Materials: Workshop Primer: Background and Context about the National Health and Nutrition Examination Survey (NHANES)." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press.
doi: 10.17226/27105.
Suggested Citation:
"Appendix D: Public-Facing Background Materials: Workshop Primer: Background and Context about the National Health and Nutrition Examination Survey (NHANES)." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press.
doi: 10.17226/27105.
Suggested Citation:
"Appendix D: Public-Facing Background Materials: Workshop Primer: Background and Context about the National Health and Nutrition Examination Survey (NHANES)." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press.
doi: 10.17226/27105.
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