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- Ethical, Legal and Social Implications (ELSI) Research Program6
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genetic Architecture of Complex Traits1
- Genome Technology Program5
- Human Genome Reference Program (HGRP)2
- Impact of Genomic Variation on Function (IGVF) Consortium3
- Encyclopedia of DNA Elements (ENCODE) Project1
- Molecular Phenotypes of Null Alleles in Cells (MorPhiC)1
- Genomic Innovator Awards2
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)3
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium2
- Developmental Genotype-Tissue Expression (dGTEx)1
- Multi-Omics for Health and Disease (Multi-Omics)1
15 Ways Genomics Influences Our World
Advances in genomics are helping you access information about your genome from your home.
… Advances in genomics are helping you access information about your genome from your home. … Did you know … led to an explosion in at-home, or "direct to consumer" genomic testing. You can even seek genomic information without involving a healthcare provider …
For Patients and Families
The Genetic and Rare Diseases Information Center helps people find useful information about genetic and rare diseases.
… The Genetic and Rare Diseases Information Center helps people find useful information about genetic and rare diseases … The Genetic and Rare Diseases Information Center (GARD)  was created in 2002 by the …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… their contributions, such as samples and health-related information, are critical for the success of most human … the specific considerations associated with contributing genomic data. In addition to being personal and unique to every individual, genomic data may, for example: Be stored and used …
About NHGRI
Information about how the NHGRI receives its funding and decides how to spend its annual budget.
… creation of policy recommendations on the use of genetic information. The NHGRI budget provides funding for a dynamic intramural research program in genetic and genomic science and technology, as well as clinical research … of the institute. Visit our Budget and Financial Information FAQ  for more information about how NHGRI is …
Educational Resources
Ancestry-informative markers are sets of polymorphisms for a DNA sequence found in different frequencies between populations from different geographical regions.
Fact Sheet
Informed consent is more than a form; it’s a process. What does it involve?
… requires careful explanation about how the participant’s genomic information will be used during and after the study, as well … informed consent for large genomics projects?  Certain genomic concepts can be challenging to convey. With advances …
Data Sharing Policies
Sample informed consent language, aligned with each of the informational elements of consent for genomic data sharing (GDS) outlined by NIH as important to convey, in language understandable to prospective participants.
… to Informational Elements Outlined by NIH Guidance  Genomic and phenotypic data, and any other data relevant for … the broadest appropriate future use and sharing of genomic and phenotypic data.  Example 1: Consent for General … (GRU)  Portions of your samples, genomic data, and health information will be stored for an unlimited period of time to …
Fact Sheet
Several regulations and policies stipulate the information that must be given to research participants prior to their enrolling in a study.
… samples for certain purposes. In accordance with the NIH Genomic Data Sharing (GDS) policy , researchers who intend to … collected or created after January 25, 2015, to derive genomic data may only do so when the original informed … Additionally, HIPPA and the Common Rule permit research on information from deceased individuals who did not provide …
News Release
NIH grants aim to gauge if genomics can be used to help diagnose diabetes, manage heart disease and guide cancer clinicians to the most effective drugs.
… beyond the academic medical center and explore the use of genomic medicine in community-based clinics and primary care … affects drug responses. A third grant examines the role of genomic information in diagnosing and treating inherited forms of …
News Release
Most pregnant women want recommendations from their doctors when deciding which information to receive from prenatal whole genome sequencing.
… from their doctors when deciding what types of information to receive from prenatal whole genome sequencing. … few years, it will significantly increase the amount of genomic information parents can learn about their fetus. But … their clinicians when faced with a tremendous range of genomic information," said Benjamin E. Berkman, J.D., M.P.H., …