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- Developmental Genotype-Tissue Expression (dGTEx)1
- Multi-Omics for Health and Disease (Multi-Omics)1
- Ethical, Legal and Social Implications (ELSI) Research Program6
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genetic Architecture of Complex Traits1
- Genome Technology Program5
- Enhancing Opportunities in Computational Genomics and Data Science1
- Human Genome Reference Program (HGRP)3
- Impact of Genomic Variation on Function (IGVF) Consortium3
- Encyclopedia of DNA Elements (ENCODE) Project1
- Molecular Phenotypes of Null Alleles in Cells (MorPhiC)1
- Clinical Genome (ClinGen) Resource1
- Genomic Innovator Awards2
- Polygenic RIsk MEthods in Diverse populations (PRIMED) Consortium1
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)2
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium2
Policies and Guidance
This page provides an overview of Resource Sharing Plans, a required document in most NIH funding applications. Most applicants for NIH funding must provide a Resource Sharing Plan (RSP) documenting plans for sharing resources that result from their federally funded work. NIH Policies that govern the sharing of resources include the NIH Model Organism Sharing Policy and the NIH Research Tools Policy.
… tools, dissemination expectations, and more.  Almost all NHGRI-supported research, spanning the various research areas … Sharing Plan. Resources that should be addressed in NHGRI Resource Sharing Plans include (but are not limited … and Sharing (DMS) Plan. Read more about the NIH and NHGRI data sharing policies and expectations . If you have …
Data Sharing
The NHGRI Data Sharing Governance Committee is responsible for the activities necessary for the Institute to implement and maintain NIH and NHGRI data sharing policies.
… The NHGRI Data Sharing Governance Committee is responsible for … for the Institute to implement and maintain NIH and NHGRI data sharing policies. These activities include:  … data sharing practices and operating procedures across NHGRI. Ensuring that NHGRI data sharing practices comply with …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… study information needed for study registration to the NHGRI GPA ( nhgrigpa@mail.nih.gov ):  NHGRI’s Basic Study Information Template    Template for … AnVIL or dbGaP) should follow these instructions . … NHGRI follows the NIH’s expectation for submission and …
About Genomics
NHGRI considers the ethical, legal and social aspect of genomics research in our work, including these key policy issues
… NHGRI is committed to driving the responsible use of genomics … issues. … Related Content … Policy Issues in Genomics … NHGRI considers the ethical, legal and social aspect of … research in our work, including these key policy issues. … NHGRI considers the ethical, legal and social aspect of …
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… research when it is impossible to locate individuals. NHGRI-funded consortia have begun to distill some of the … implications, but which may be useful for reproductive planning Results of uncertain significance In studies that do … include information about the relevance to reproductive planning of any results that are returned. Considerations of …
Policy Issues
In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.
… how the confidentiality of records will be maintained. NHGRI has developed an informed consent resource  for …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… benefits of generating large-scale genomic data. … The NHGRI Informed Consent Resource, originally created in 2010 …
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… discrimination). Information on GINA is available at the NHGRI website , and OHRP has published GINA guidance  for … clinically relevant research results will be provided. The NHGRI Special Considerations for Genomics Research page has …
Policy Issues
Most genetic tests today are not regulated, meaning that they go to market without any independent analysis to verify the claims of the seller.
Explainer
Appropriate use of population descriptors in research is a critical scientific issue that is important for advancing genomic science and improving healthcare across human populations.
… with varied ethical, legal and social implications (ELSI). NHGRI will continue its focus on this issue to promote the … of genomic science, genomic medicine and ELSI research. NHGRI is also focusing on this issue to:  Recognize that … research.  Eliminate disparities in genomic medicine.  NHGRI strongly encourages researchers to move beyond …