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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, …
Policy Issues
In June 2013, the Supreme Court determined that DNA in its natural form cannot be patented.
… databases within 24 hours of being generated. This policy of open access to the genome has been a core ethos of … over gene patents moved on to the Court of Appeals for the Federal Circuit. This court affirmed part of Judge Sweet's … patent case , the Supreme Court returned it to the Federal Circuit for reexamination. upon reexamination, the …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… many studies. While informed consent is not required by federal regulations for research that is not considered to be … For instance, the NIH Genomic Data Sharing (GDS) policy expects that researchers obtain consent when they plan … Policy Issues …
Policy Issues
Patients with genetic disorders and members of the public have diverse about germline genome editing.
… it does have restrictions through legislation and NIH policy. The Appropriations Act of 2016, passed in December … in appropriation bills since 1996, prohibits the use of federal funds for research that involves the creation or … use of CRISPR/Cas9 in embryos." 3 In July 2017, using non-federal funding, scientists at Oregon Health and Science …
Policy Issues
In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.
… extend to private health insurers, Medicare, Medicaid, Federal Employees Health Benefits, and the Veterans Health … Policy Issues …