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- Multi-Omics for Health and Disease (Multi-Omics)1
- Ethical, Legal and Social Implications (ELSI) Research Program5
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genome Technology Program5
- Impact of Genomic Variation on Function (IGVF) Consortium1
- Clinical Genome (ClinGen) Resource1
- Polygenic RIsk MEthods in Diverse populations (PRIMED) Consortium1
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium2
News Release
NIH will support research that incorporates DNA sequence information into electronic medical records.
… will support research that incorporates DNA sequence information into electronic medical records. The goal of … she said, and ways in which doctors might use this information to improve clinical treatment and practice. These … and the effects on healthcare systems, in using this information. The following research groups have been awarded …
News Release
An online Informed Consent Resource created in 2009 by NHGRI has been updated to keep pace with advances in genomics over the past several years
… one million volunteer participants whose genetic information will be studied to help advance understanding … important that we provide participants with clear information about the issues relevant to genomic research … privacy and confidentiality. It also includes examples and information to guide researchers through the complex consent …
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 …
Fact Sheet
Informed consent is more than a form; it’s a process. What does it involve?
… careful explanation about how the participant’s genomic information will be used during and after the study, as well … challenging to convey. With advances in genome sequencing technology, increased data sharing and concerns around … that must be met during this process are: providing key information. confirming the participant understands the …
News Release
NHGRI researchers asked patients, parents and physicians in the sickle cell disease community (SCD) what they wanted and needed to know about genome editing to make informed decisions about participating in genome-editing clinical trials.
… remain about ethical, legal and social implications of the technology. People who are seriously ill may overestimate the … and hopefully do a better job of pinpointing what kinds of information will be most useful to potential research … and hopefully do a better job of pinpointing what kinds of information will be most useful to potential research …
Fact Sheet
Several regulations and policies stipulate the information that must be given to research participants prior to their enrolling in a study.
… Additionally, HIPPA and the Common Rule permit research on information from deceased individuals who did not provide … must authorize disclosure of individual health information, including individual research results.  It is … a specific circumstance, researchers should consider what information is important to convey to ensure respect for …
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 …
News Release
Researchers funded by NHGRI’s Genome Technology Program include a wide range of investigators with a variety of scientific expertise.
… Researchers funded by NHGRI’s Genome Technology Program include a wide range of investigators with … novel approaches and technologies through the Genome Technology Program . Over the past 20 years, the program has … associated with their optimization and use.  More information and registration can be found here . … … …