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Policy Issues
Participating in genomics research is an opportunity to support exploration of the genome and help scientists understand, prevent, detect and treat disease.
… some care as part of your participation. To receive clinical care, you should consult your regular physician. How … and results database of federally and privately supported clinical trials conducted in the United States and around the … detect and treat disease. … Human Subjects Research, Genetics Research, Clinical Trials, Data Privacy, Human …
Event
NHGRI hosts a virtual Q&A with science journalist Angela Saini, author of “Superior: The Return of Race Science” on Thursday, July 23, 2020.
… in the way scientists thought about human variation and genetics. At a time when racialized nationalisms are a … Q&A with science journalist Angela Saini: Race, gender and genetics … NHGRI hosts a virtual Q&A with science journalist …
Event
On March 15, 2021, NHGRI’s Policy and Program Analysis Branch hosted a panel discussion exploring a constant tension at multiple levels in genomics research and medicine, from patient-provider interactions to research engagement with marginalized communities.
… tension that spans all areas of biomedical research and clinical practice is the question of how experts can act in …
Policy Issues
Revisions to the Common Rule modernize, simplify, and enhance oversight for human subjects research in the United States.
… biospecimens will undergo WGS. Lastly, consent forms for clinical trials will be subject to a one-time posting … or taken out of the rule entirely. Coverage of All Clinical Trials Only federally-funded clinical trials are … in the United States. ​ … Human Subjects Research, Genetics Research, Clinical Trials, Data Privacy, Human …
Outreach
The USA Science and Engineering Festival is an opportunity to take part in hands-on genetics and genomics activities.
… Science and Engineering Festival to take part in hands-on genetics and genomics activities. Here we've provided a few … Festival is an opportunity to take part in hands-on genetics and genomics activities. … The USA Science and … Festival is an opportunity to take part in hands-on genetics and genomics activities. … Outreach …
For Teachers
The Your Genome & You infographic introduces the basics of genetics and genomics, and how the science impacts our lives.
… Your Genome & You  infographic introduces the basics of genetics and genomics, and how the science impacts our … and Engagement in Genomics. To find out more about genetics and genomics, visit www.genome.gov. … What is it? … Life Genes in Life is a place to learn about all the ways genetics is a part of your life. On this site you will learn …
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… such as collecting blood or other tissue samples. In clinical trials guided by genetic information, additional … and scarring at the biopsy site (always). If part of your clinical tissue biopsy is used for research, there will be no … confirmation of a suspected diagnosis based on your clinical symptoms. It is likely that you will learn something …
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.
Policy Issues
Genetic information is used by law enforcement to investigate criminal acts and exonerate those who have been convicted of crimes they did not commit.
Fact Sheets
Genome-wide association studies involve scanning markers across the genomes of many people to find genetic variations associated with a particular disease​.