Search Results
Policies and Guidance
Frequently Asked Questions regarding the NHGRI's Metadata and Phenotypic Data Sharing Expectations.
… the NIH definition of metadata provided in the Final NIH Policy for Data Management and Sharing : Metadata  are “data … The NIH GDS Policy  states that NIH-funded researchers generating genomic …  builds upon the expectation outlined in the NIH GDS Policy and emphasizes the importance of sharing comprehensive …
Policy Issues
El uso de seres humanos en las investigaciones biomédicas, clÃnicas y socioconductuales puede ofrecer entendimiento y descubrimientos que no pudieran obtenerse de ninguna otra manera.
… Todas las investigaciones financiadas por el gobierno federal en que se estudien seres humanos, tales como las … por o realizada en el NIH, está sujeta a la PolÃtica Federal para la Protección de Seres Humanos en Investigaciones ( Federal Policy for the Protection of Human Research Subjects ) o …
Policy Issues
Genetic information is used by law enforcement to investigate criminal acts and exonerate those who have been convicted of crimes they did not commit.
… The Combined DNA Index System (CODIS) is the Federal Bureau of Investigation’s (FBI) program of support … suspect. Familial searching is not performed at the federal level, and the FBI does not regulate use at the state … which applies to all law enforcement agencies (i.e., federal, state and local) that receive federal funding, …
Policy Issues
Hay leyes y polÃticas que sirven para proteger la privacidad de la información genómica de un individuo.
… DNA Index System ), es el programa de apoyo de la Oficina Federal de Investigaciones ( Federal Bureau of Investigation , FBI) para las bases de … ADN remitidos al FBI por los laboratorios forenses a nivel federal, estatal y local. La creación de bases de datos de …
Policy Issues
Synthetic biology is a field of science that involves redesigning organisms for useful purposes by engineering them to have new abilities.
… ?" section of this resource to learn about the federal regulations in place to regulate so-called " dual use … related to synthetic biology. The US government's Federal Select Agents Program  regulates the possession of … as laid out by the Dual Use Research of Concern (DURC) policy. For more information about the biosecurity policies …
Policy Issues
Payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement.
… of genetic testing. There are several reports created by policy and scientific experts seeking to advise Federal agencies on how to reimburse for genetic tests: … determine premiums. To address these concerns, there is a Federal law called the Genetic Information Nondiscrimination …
The Genomics Landscape
In the February 2024 issue of The Genomics Landscape, NHGRI Director Eric Green spotlights the Genome Statute and Legislation Database, which recently received a major revamp to help researchers, policy analysts, and the public more easily find state-level legislation related to genomics.
… while multiple tools exist for organizing and searching federal-level legislation, fewer resources are available for … recently received a major revamp to help researchers, policy analysts, and the public more easily find state-level … trends can be helpful for understanding the direction of federal legislation. By tracking how different states have …
Policy Issues
The 9 steps a bill can go through before becoming a law, using the Genetic Information Non-Discrimination Act of 2003 as an example.
… , which is the official government website that tracks federal legislation. Step 3: The bill goes to committee As … Policy Issues …
Policy Issues
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.
… Institute This website allows users to search for Federal and state laws and regulations. NHGRI’s Genome … Medical Center, this database allows users to search federal and state statutes, regulations, and reported … decisions. The database allows searches by jurisdiction (federal, state, and individuals states), source type, topic, …
Policies and Guidance
Guidance describing NHGRI’s position on appropriate third-party involvement.
… investigators that are subject to the NIH Data Sharing Policy or the NIH Genomic Data Sharing (GDS) Policy , excluding grantees or contractors funded through the … issues that conflict with Public Health Service (PHS) policy on grants or contracts (particularly as to reporting, …