Search Results
The Genomics Landscape
In the August 4, 2022 edition of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., talks about the establishment of the Global Biodata Coalition (GBC), which aims to move towards more internationally coordinated, sustainable, and streamlined mechanisms that support the biodata ecosystem.
… that are now working to understand the global biodata resource infrastructure and to move towards more … over the last few decades. The depth and breadth of this resource makes it unique within NIH and the larger scientific … a New Competency: Genomics (MINC) Toolkit is the only resource of its kind that targets the largest healthcare …
Research Funding
A scalable and interoperable resource that leverages cloud-based infrastructure for genomic data access, sharing and computing.​
… study registration and DAR management service informed by the GA4GH DUO standard, which enables the … and other controlled-access data in compliance with the informed consent of a study’s participants. Multiple NIH DACs piloted … data scientist users. Specifically, the AnVIL resource provides genomic researchers with the following key …
News Release
Three summer interns advanced biomedical research as part of the NIH Summer Internship Program in Biomedical Sciences.
… Malformation Syndromes in Diverse Populations , an online resource that helps healthcare providers diagnose patients … skeletal abnormalities. "Our interns are contributing to a resource that can save lives and provide accurate diagnostics … Summer interns help expand a critical resource for diagnosing patients …
Health
Resources about genetic diseases and the importance of knowing your family health history.
Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… subjects research; therefore, they are not subject to the informed consent requirements of the Common Rule. However, some groups … this designation. In 2014, Congress passed a law requiring consent for the research use of de-identified blood spots … concerns. While many companies have robust privacy and informed consent policies, no federal laws prohibit companies …
For Teachers
Tools and resources for teaching the concepts of transcription and translation, two key steps in gene expression
… and Translation Teachers' Domain is a free educational resource produced by WGBH with funding from the NSF, which … on the topics of transcription and translation.This resource is an interactive activity that starts with a … translation.In addition to the interactive activity, the resource also includes a background narrative and discussion …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… for Requesting an Exception for Samples Lacking Explicit Consent for Future Research Use and Broad Data Sharing    … the sharing of sensitive data to discuss approaches for informed consent, appropriate use, risk mitigation and benefit sharing … about NHGRI’s expectations for genomic data sharing. Informed Consent Requirements Per the NIH GDS Policy, for …
For Health Professionals
The ISCC-PEG Project Groups have developed resources, presentations for national meetings, and published articles and abstracts.
… and Direct-to-Consumer Genetic Testing (DTC-GT) 2025 Resource NHGRI Fact Sheets Pharmacogenomics Fact Sheet … Direct-to-Consumer Genetic Testing (DTC-GT) 2023 Resource NHGRI ISCC-PEG and Global Genetics and Genomics … Disorder and Vaccines: Ethan and his mother, Dai G3C 2023 Resource NHGRI ISCC-PEG and Genome.gov Genomics Education …
Policy Issues
NHGRI has created the IDE Greenhouse as an educational resource to help increase understanding of the regulation in the genomics context.
… NHGRI has created the IDE Greenhouse as an educational resource to help understand the regulation in the context of … interested in contributing additional documents to this resource can reach out to ppab@nih.gov . … NHGRI has created the IDE Greenhouse as an educational resource to help increase understanding of the regulation in …
About Genomics
Resources for understanding the first truly complete sequence of the Y chromosome, the final human chromosome to be fully sequenced.