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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
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 …
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 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 …
Event
The Advances in Genomic Technology Development meeting and Genome Technology Forum were hosted by the National Human Genome Research Institute (NHGRI) Technology Development Coordinating Center (TDCC) at The Jackson Laboratory in Farmington, CT from June 10-13, 2024.
… The Advances in Genomic Technology Development (AGTD) meeting was hosted by the National Human Genome Research Institute (NHGRI) Technology Development Coordinating Center (TDCC) at The … of the meeting was to provide grantees of the NHGRI Genome Technology Program an open forum to share and discuss key …
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 …
Event
The Advances in Genomic Technology Development (AGTD) 2022 Annual Meeting was hosted by the Technology Development Coordinating Center (TDCC) from July 12-14, 2022 at The Jackson Laboratory (Farmington, CT).
… Institute for Biological Studies 9:25 a.m. AVATAR: Novel Technology for Highly Parallel Analysis of Variation in … Sensors Omar Abudayyeh, Ph.D. Massachusetts Institute of Technology 1:15 p.m. Multiplex Genomic Recording of Enhancer … Panel Discussion 2:20 p.m. Coffee Break New Sequencing Technology Session Moderators: Sukanya Punthambaker, Ph.D., …
Event
NHGRI hosted the virtual Advanced Genomic Technology Development Meeting on May 27-29, 2020.
… Institute (NHGRI) hosted the virtual Advanced Genomic Technology Development Meeting, on May 27-29, 2020. The … The meeting will bring together NHGRI Genomic Technology Program grantees, other scientists, and engineers … to trainees. … Virtual … 2020 Advanced Genomic Technology Development Meeting … NHGRI hosted the virtual …
Event
NHGRI hosted the virtual Advanced Genomic Technology Development Meeting on May 25-27, 2021.
… Institute (NHGRI) hosted the virtual Advanced Genomic Technology Development Meeting, on May 25-27, 2021. The … The meeting will bring together NHGRI Genomic Technology Program grantees, other scientists, and engineers … set of participants. … Virtual … 2021 Advanced Genomic Technology Development Meeting … NHGRI hosted the virtual …