Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey

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 administers a physical examination, collects biospecimens, and reports some test results (e.g., cholesterol levels) to the participant. While visiting communities large and small throughout the country, NHANES collects health and nutrition data from a representative sample of individuals through in-person interviews and health examinations that take place at special mobile examination centers. The examination component consists of medical, dental, and physiological examinations, as well as laboratory tests.

On December 2, 7, and 8, 2022, a workshop was convened to focus on anticipated future collections of genomic data by NHANES. The 2022 workshop explored ethical considerations and current practices for returning genomic information from active research and population surveys. This Proceedings of a Workshop summarizes the presentations and discussions at the workshop.

Table of Contents

• Front Matter
• 1 Introduction
• 2 NHANES Current Structure and Opportunities for Adding Genomics (Session 1)
• 3 Return of Clinically Actionable Genetic Results (Session 2)
• 4 Regulatory Issues in the Return of Genetic Results (Session 3)
• 5 Process for the Return of Genetic Results (Session 4)
• 6 Informed Consent When Considering Returning Genetic Results to Survey Participants (Session 5)
• 7 Considerations in the Return of Genetic Results: Lessons from Other Research Studies (Session 6)
• 8 Key Themes and Considerations for Future National Health and Nutrition Examination Survey (NHANES)
• Appendix A: Public Meeting Agendas
• Appendix B: Committee and Speaker Biosketches
• Appendix C: Public-Facing Background Materials: Glossary of Terms and Acronyms
• Appendix D: Public-Facing Background Materials: Workshop Primer: Background and Context about the National Health and Nutrition Examination Survey (NHANES)
• Committee on National Statistics
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