Search Results
The Genomics Landscape
In 2022, The Genomics Landscape spotlighted genomic data sharing each month in a series of entries. This page contains a collection of each of those entries.
… Informed Consent Resource to provide guidance and sample language for genomics research, including how to describe …
Fact Sheets
Genomics is the study of all of a person's genes (the genome), including interactions of those genes with each other and with the person's environment.
… that make up the human genome. With its four-letter language, DNA contains the information needed to build the …
News Release
The Genetics and Public Policy and Genetics and Education Fellowships provide a pathway for scientists to pursue careers in science policy or education.
… The fellowship teaches you to speak the policy-making language to complement the scientific skills you already …
News Release
Researchers have found powerful clues to why certain processes and systems in the mouse are so different from those in people.
… and found mouse and human genomes to have a common language in regulation, but that there is a tremendous amount …
News Release
Experts discussed the gaps, challenges and opportunities in genomics at Genomic Medicine Meeting VIII: NHGRI's Genomic Medicine Portfolio, sponsored by NHGRI.
… about race and health, lack of minority investigators, language difficulties and a lack of public awareness of …
Research Funding
The Encyclopedia of DNA Elements (ENCODE) aims to identify all functional elements in the human and mouse genomes.
… ENCODE Consortium has developed sample informed consent language that explicitly asks for 1) consent to genomic … sharing of genomic data. Below are links to this sample language as well as two examples of IRB-approved consents …
News Release
Knowing your family health history can aid in detecting unique disease risks and lead to better prevention and treatment.
… research. From 823freckles: Awesome topic. Other than language/communication barriers, what kind of barriers are …
News Release
Researchers sequence the genomes of healthy participants, then analyze the data to find presumed, mutations that might lead to a genetic condition.
… of hearing, balance, taste, smell, voice, speech, and language and provides health information, based upon …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… with Data and Biospecimens: Points to Consider and Sample Language for Future Use and/or Sharing , May 2022 … For … access or for unrestricted access. Similarly, consent language should avoid both restrictions on the types of users …
Research Funding
​CSER is rapidly advancing the knowledge necessary to develop best practices for implementating genomic sequence data into clinical care. ​
… and, to the extent feasible, develop standardized consent language and protocols. Discuss and compile experience with … governance recommendations with best practice and/or model language for informed consent. Actionable Variants and Return …