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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
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 … Non-Discrimination Act of 2003 as an example. … Policy Issues …
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 …
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 … bills introduced during U.S. state legislative sessions. … Policy Issues …
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, …
News Release
John Ohab, Ph.D., a neuroscientist and science communicator, has been named chief NHGRI's Communications and Public Liaison Branch.
… goals and policies. … CPLB is part of the Division of Policy, Communications, and Education (DPCE), whose mission … Audiences include researchers, healthcare providers, policy makers, the public and the news media. "The National … and Public Liaison Branch, CPLB, Division of Policy, Communications, and Education (DPCE), communications …
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 … and is an important ethical requirement in research. … 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 … discrimination by employers and health insurers. … Policy Issues …