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- Ethical, Legal and Social Implications (ELSI) Research Program5
- Genomics-Enabled Learning Health Systems (gLHS)2
- Human Genome Reference Program (HGRP)1
- Impact of Genomic Variation on Function (IGVF) Consortium1
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)3
- Developmental Genotype-Tissue Expression (dGTEx)1
Policies and Guidance
NHGRI does not collect personally identifiable information about you on genome.gov unless you volunteer to provide it.
15 Ways Genomics Influences Our World
Advances in genomics are helping you access information about your genome from your home.
… ethical questions. Since children may not be able to consent to such a test and/or they might be unable to fully …
News Release
On March 16, Rep. Louise M. Slaughter (D-N.Y.), lead author of the Genetic Information Nondiscrimination Act of 2008 (GINA), passed away at the age of 88.
Staff
Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome Research Institute (NHGRI)
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… … Elena Ghanaim, NIH Genomic Data Sharing (GDS) Policy, Informed Consent, health privacy regulations, human research …
Staff
Cristina Kapustij was the chief of the Policy and Program Analysis Branch at the National Human Genome Research Institute until June 2024.
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… … Elena Ghanaim, NIH Genomic Data Sharing (GDS) Policy, Informed Consent, health privacy regulations, human research …
MINC
MINC resources for educators
… Resource Title File Type Educator Letter PDF Educators - …
MINC
MINC resources for administrators.
… Resource Title File Type Administrator Business Case MS Word …
Educational Resources
A family history is a record of medical information about an individual and their biological family.
Educational Resources
Deoxyribonucleic acid (abbreviated DNA) is the molecule that carries genetic information for the development and functioning of an organism.
15 Ways Genomics Influences Our World
Genomics is fostering an appreciation for what our DNA means for our health, identities and culture.
… major areas of study in ELSI research  are questions about consent and privacy. For example, what do you need to know … your DNA before you agree to participate? That's called " informed consent ." As new areas of genomics have developed in recent …