Search Results
The Genomics Landscape
In the December 3, 2020 edition of The Genomics Landscape, Dr. Eric Green spotlights on ELSIhub.
… by next Thanksgiving. I was remiss in making you aware of an important National Institutes of Health (NIH) milestone … opportunities, solicit expert commentary, obtain advice on policy or legislation, and arrange mentor/mentee … research process that can improve reproducibility of study results and promote reuse of high-value datasets for future …
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.
… en Investigaciones ( Federal Policy for the Protection of Human Research Subjects ) o 'Regla Común'. Esta regulación … de biomuestras (" Workshop on the Release of Research Results to Participants in Biospecimen Studies "). El … para formar el Consorcio de Entrega de Resultados ( Return of Results Consortium ). Los investigadores del …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… It is essential to respect the rights and interests of research participants, given that their contributions, … For instance, the NIH Genomic Data Sharing (GDS) policy expects that researchers obtain consent when they plan … shared. Whether participants will receive any individual results from current or future studies using their samples or …
Policy Issues
In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.
… to participate in the research needed for the development of new tests, therapies, and cures. This page provides an … upon employment by the military, and so genetic test results may affect one’s ability to access TRICARE … discrimination by employers and health insurers. … Policy Issues …
Policy Issues
Most genetic tests today are not regulated, meaning that they go to market without any independent analysis to verify the claims of the seller.
… As the field of genomics advances, genetic and genomic tests are becoming more common in, and out of, the clinic. Yet most genetic tests today are not … in 2010 the FDA announced plans to move away from a policy of "enforcement discretion" (see next section, "FDA …
Policy Issues
NHGRI wants to ensure that all populations benefit from the advances of genomics research.
… Genomics research is shaping the future of medicine. For these advances of this research to benefit everyone more equally and improve … as becoming research scientists, research participants and policy makers. It is important for everyone to be informed …
Policy Issues
Synthetic biology is a field of science that involves redesigning organisms for useful purposes by engineering them to have new abilities.
… Synthetic biology is a field of science that involves redesigning organisms for useful … and companies around the world are harnessing the power of nature to solve problems in medicine, manufacturing and … as laid out by the Dual Use Research of Concern (DURC) policy. For more information about the biosecurity policies …
Policy Issues
Patients with genetic disorders and members of the public have diverse about germline genome editing.
… Patients with genetic disorders and members of the public, both in the United States and around the … disorders. … Patients, patient advocates, and families of patients with genetic disorders have diverse views on … it does have restrictions through legislation and NIH policy. The Appropriations Act of 2016, passed in December …
Policy Issues
Most ethical discussions about genome editing center on human germline editing because changes are passed down to future generations.
… Most of the ethical discussions related to genome editing center … whether or not germline editing should be permissible. As of 2014, there were about 40 countries that discouraged or … that concerns about enhancement should be managed through policy and regulation. Lastly, commenters on the issue are …
Policies and Guidance
A list of reports, documents, workshop summaries and other works published by NHGRI.
… A list of reports, documents, workshop summaries and other works … reflecting its new organizational mantra, THE FOREFRONT OF GENOMICS®, and the exciting areas that will be explored … Advisory Council Report Certifying Compliance with the NIH Policy on Inclusion Guidelines The NIH mandate that women and …