Search Results
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 …
Policy Issues
This glossary contains definitions for commonly used terms (such as "bill", "statute", "regulation" and more) found in the Genome Statue and Legislative Database.
… ("private bills"), such as individual claims against the federal government or a state. Chapter: A division of each title of the Code of Federal Regulations that deals with regulations for a … or the state legislature to become effective. At the federal level, Executive Orders are published in the Federal …
News Release
NIH released a Request for Information seeking comments on the data submission and access process for dbGaP.
… Office of Science Policy … National Institutes of Health (NIH) Genomic Data Sharing Policy establishes a system to promote data sharing, while … . For more information on the NIH Genomic Data Sharing Policy, please visit NIH Genomic Data Sharing . We invite all … Data Subject to the NIH Genomic Data Sharing Policy to allow investigators to request permission to …
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, …
Staff
Dr. Nicole Lockhart is a program director in NHGRI's Division of Genomics and Society.
… (NCI). While at NCI, she focused on ethical, legal and policy issues related to biobanking. Her academic training is … for the Advancement of Science (AAAS) Science and Policy Fellow and as a Christine Mirzayan Science and Technology Policy Graduate Fellow. Currently, Dr. Lockhart focuses on …
Policy Issues
Most ethical discussions about genome editing center on human germline editing because changes are passed down to future generations.
… that concerns about enhancement should be managed through policy and regulation. Lastly, commenters on the issue are … objections to the use of human embryos for research. Federal funds cannot be used for any research that creates or … Policy Issues …
Policies and Guidance
NHGRI ensures that our website is in compliance with Section 508 of the Rehabilitation Act (29 U.S.C. 794d).
… that all individuals with disabilities (whether they are federal government employees or members of the general … more about the regulations governing the accessibility of federal electronic information products, visit the United … Policy …