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The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… asking for your permission to collect samples and health information from you for a research study on [specific … asking for your permission to collect samples and health information to be stored in a research biobank and used for … your participation in a study involving samples and health information you provided for [insert name of previous project …
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… research uses for which samples, genomic data, and health information might be shared. Investigators should ensure that … and broad sharing of genomic and phenotypic data. For more information on genomic data sharing expectations, see the  … of previously collected samples, research data, and health information, investigators should consult with their IRBs to …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… their contributions, such as samples and health-related information, are critical for the success of most human … for genomics research, researchers should consider the information participants may need to understand risks and … human specimens or cell lines. … Vast amounts of personal information about participants are generated through studies …
Policy Issues
The GINA is an important U.S. civil rights law that protects individuals from discrimination based on their genetic information.
… The Genetic Information Nondiscrimination Act, commonly known as GINA, is … individuals from discrimination based on their genetic information. It was first introduced into the U.S. Congress … prohibits health insurers from using someone's genetic information to refuse insurance or charge higher prices, and …
Policy Issues
Scientists have edited genomes for many years, but CRISPR technology has improved the speed, cost, accuracy, and efficiency of genome editing ​
… of genome editing in humans, the main application of this technology has been in basic research. Editing the genomes of … and ability to edit genomes for many years, but CRISPR technology has brought major improvements to the speed, cost, … recombination is the exchange (recombination) of genetic information between two similar (homologous) strands of DNA. …
Event
On Tuesday, December 17, 2024, ASHG and NHGRI co-host an informational webinar about Post-Baccalaureate Genomics Analyst Fellowship program for potential applications.
The Genomics Landscape
In the January 2020 edition of The Genomics Landscape, NHGRI Director Eric Green highlights the newly developed polygenic risk scores webpage, which provides graphical and textual information about polygenic risk scores, describes polygenic traits, introduces how polygenic risk scores can be calculated, and explains how such scores can be interpreted.
… risk score webpage , which provides graphical and textual information about polygenic risk scores and more! … diabetes, and depression. Such methods take into account information about variants across a person’s genome, … Director on human gene editing: 'We must never allow our technology to eclipse our humanity' Genome: Unlocking Life's …
The Genomics Landscape
In the July 7, 2022 edition of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., emphasizes the importance of the Technology Transfer Office and its mission to manage all the legal negotiations that help to protect federally funded research from being unduly exploited, while also giving that research avenues to reach patients through the commercialization of promising advances.
… to NIH intramural researchers for exploration of genotype information through the relatively new Reverse Phenotyping … on earth!     …   Claire Driscoll, director of NHGRI's Technology Transfer Office (TTO), often exhorts one of her … NHGRI program officers, their expertise, and their contact information, or specifically search by scientific area. … …
The Genomics Landscape
In the May 2020 edition of The Genomics Landscape, NHGRI Director Eric Green details how NIH is ramping up research on COVID-19; NHGRI's expansion of its Genome Technology Program; and the the DiY Genome: Unlocking Life's Code exhibition toolkit.
… genomic studies have the potential to yield valuable information that will aid efforts to prevent, diagnose, … related to bioethics, the use of electronic health record information, population tracking, genetic epidemiology, and … and commercialization of rapid diagnostic testing technology for COVID-19. The initiative is designed to …
The Genomics Landscape
In the December 3, 2020 edition of The Genomics Landscape, Dr. Eric Green spotlights on ELSIhub.
… beyond. The platform includes a wealth of ELSI research information. Key features include ELSI literature resources, an ELSI scholar directory, information on ELSI-relevant funding opportunities, and an … more broadly available. The policy includes supplemental information on data management and sharing costs and data …