NIH Wants Your Take on Cataloging 26,000 Genetic Weirdness Tests
Published Date: 1/22/2026
Notice
Summary
The National Institutes of Health wants your thoughts on keeping their Genetic Testing Registry going strong! This online hub helps labs and researchers share info about genetic tests for over 26,000 conditions. If you have ideas or concerns, speak up by March 23, 2026—no cost involved, just your voice!
Analyzed Economic Effects
2 provisions identified: 1 benefits, 1 costs, 0 mixed.
Laboratories face time-only reporting burden
Laboratories, test developers, manufacturers, and researchers may voluntarily submit information to the NIH Genetic Testing Registry. NIH estimates a total annualized respondent burden of 2,837 hours across 402 respondents and 6,432 responses; OMB approval is requested for 3 years and there are no costs to respondents other than their time.
Clinicians get centralized genetic-test information
The Genetic Testing Registry gives clinicians and researchers a single online place to find details about tests for over 26,000 genetic conditions, including tests for microbes such as SARS-CoV-2 used to diagnose COVID-19. The registry provides information on test accuracy, validity, and usefulness and highlights evidence gaps where more research is needed.
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Key Dates
Department and Agencies
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