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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 …
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 … found in the Genome Statue and Legislative Database. … 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 … bills introduced during U.S. state legislative sessions. … Policy Issues …
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 … because changes are passed down to future generations. … 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 … language or in another language, please contact us . … Policy … Notice to Limited English Proficient Individuals … …
Policies and Guidance
NHGRI is committed to maintaining a work environment that is courteous, respectful, and free from harassing behaviors for its employees, contractors, volunteers, interns and visitors.Â
… Workforce Diversity October 23, 2019 NIH Anti-Harassment Policy and Videos Anti-Harassment Q&A … Too Many Seniors … harassment or discrimination. NHGRI has a no-tolerance policy in this regard, and this extends to work environments …
Policies and Guidance
A list of reports, documents, workshop summaries and other works published by NHGRI.
… Advisory Council Report Certifying Compliance with the NIH Policy on Inclusion Guidelines The NIH mandate that women and … Advisory Council Report Certifying Compliance with the NIH Policy on Inclusion Guidelines The NIH mandate that women and …
The Genomics Landscape
In the December 3, 2020 edition of The Genomics Landscape, Dr. Eric Green spotlights on ELSIhub.
… opportunities, solicit expert commentary, obtain advice on policy or legislation, and arrange mentor/mentee … sharing in biomedical research, NIH released the Final NIH Policy for Data Management and Sharing in October 2020. The policy applies to all NIH-funded research and will go into …