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- Multi-Omics for Health and Disease (Multi-Omics)1
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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
Scientists have edited genomes for many years, but CRISPR technology has improved the speed, cost, accuracy, and efficiency of genome editing
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… 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. …
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 …
Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… privacy should be respected when their genomic information is used for research, clinical applications or … genetic and genomic privacy in these domains, along with information on the specific laws and policies that protect the privacy of genetic and genomic information. In the United States, the applicable privacy …
Policy Issues
Genome editing is a method that lets scientists change the DNA of many organisms, including plants, bacteria, and animals.
… to treat Layla, and instead used another genome editing technology called TALENs. Doctors tried many treatments … technologies are critical steps to ensure that this technology is ready for use in patients. Ethical concerns … and animals. ​ … CRISPR, CRISPR-Cas9, Genome Editing Technology, Genome Editing, Genomic Technology, Gene Editing, …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… the relevant template below or send the basic study information needed for study registration to the NHGRI GPA ( nhgrigpa@mail.nih.gov ):  NHGRI’s Basic Study Information Template    Template for Requesting an … data sharing policies. For general NIH data sharing policy information, please visit NIH's Scientific Data Sharing …