Completed
Topics
Population surveys collect information from participants by asking questions. Today, many surveys also collect biologic specimens that can be used to analyze a respondent's DNA and other biomarkers. The National Health and Nutrition Examination Survey (NHANES) administers a physical examination, collects biospecimens, and reports some test results (e.g., cholesterol levels) to the participant. Traditionally, NHANES participants have been told that they will not be contacted with personal genetic results. However, clinical science is evolving to encourage more return of individual research results. Therefore, NHANES will revisit the issue of if, when, and how to return genetic results to study participants.
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Workshop
·2023
Population surveys collect information from participants by asking questions. Today, many surveys also collect biologic specimens that can be used to analyze a respondents DNA and other biomarkers. The National Health and Nutrition Examination Survey (NHANES) is a population survey that also adminis...
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Description
A planning committee of the National Academies of Sciences, Engineering, and Medicine will organize and execute a public 1.5 to 2-day workshop to present and discuss issues in returning results from genome analysis from the National Health and Nutrition Examination Survey (NHANES) and other population surveys. The workshop will bring together geneticists, bioethicists, clinicians, genetic counselors, survey methodologists, and behavioral and social scientists, as well as public health and other experts to examine relevant issues, such as:
- Explore the feasibility of returning genomic results to NHANES participants given certain operational constraints;
- Identify models and current practices for returning clinically actionable genomic results that could inform approaches for population surveys;
- Identify current practices to incorporate clinically actionable genomic results into informed consent;
- Describe the scope of state-of-the-art genomic technologies that could be or are being applied in population surveys and the potential contributions of different types of genomic data (e.g., genotyping vs. sequencing);
- Identify current practices for conducting analyses of NHANES genomic survey data including anonymization and access to data by public health and other researchers which aligns with National Center for Health Statistics Data Release Policy; and
- Identify current practices in the return of results of other “omic” fields (i.e., microbiome, transcriptomics, proteomics) and epigenetics in NHANES.
The planning committee will define the specific topics to be addressed, develop the agenda, and select and invite speakers and other participants. Following the event, a proceedings of the workshop will be produced in accordance with institutional guidelines.
Collaborators
Sponsors
Centers for Disease Control and Prevention (CDC)
Staff
Melissa Chiu
Lead
Celeste Stone
Lead
Major units and sub-units
Center for Health, People, and Places
Lead
Health and Medicine Division
Lead
Division of Behavioral and Social Sciences and Education
Lead
Board on Health Sciences Policy
Lead
Biomedical and Health Sciences Program Area
Lead
Social and Economic Systems Program Area
Lead
Committee on National Statistics
Lead