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- Ethical, Legal and Social Implications (ELSI) Research Program5
- Genomics-Enabled Learning Health Systems (gLHS)2
- Human Genome Reference Program (HGRP)1
- Impact of Genomic Variation on Function (IGVF) Consortium1
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)3
- Developmental Genotype-Tissue Expression (dGTEx)1
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
… important role must be thoughtfully considered and fully informed," said Laura Lyman Rodriguez, Ph.D., director of the … their contribution to any research activities." Informed consent is the basic and primary tool through which … ethical and legal standpoint. An online Informed Consent Resource (ICR) introduced in 2009 by the National Human …
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… This webpage discusses basic elements of informed consent that are required by the Common Rule (45 CFR 46, … and that are relevant to genomics. … The Informed Consent Resource …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… reproductive decision-making.  In designing an effective informed consent process for genomics research, researchers should … large-scale genomic data. … The NHGRI Informed Consent Resource, originally created in 2010 and continuously …
Fact Sheet
Informed consent is more than a form; it’s a process. What does it involve?
… The Big Picture  The informed consent process ensures that research participants can make … about whether to take part in a research study.  Informed consent must be accessible and understandable to the …
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… This webpage discusses genomics-relevant considerations for informed consent and provides guidance on how to approach them. It … guidance on how to approach them. … The Informed Consent Resource …
The Informed Consent Resource
Examples consent forms used by genomics research projects.
… These consent forms were used in various NIH-funded research … Network Consent and Community Consultation Workgroup Informed Consent Task Force   NA Exome or Genome Sequencing … May 2008 1000 Genomes Project   Developing a research resource for studies of human genetic variation Open Access …
Data Sharing Policies
Sample informed consent language, aligned with each of the informational elements of consent for genomic data sharing (GDS) outlined by NIH as important to convey, in language understandable to prospective participants.
… research in a manner consistent with the participant’s informed consent and all applicable federal and state laws and … Data Sharing Policy … This page of the Informed Consent Resource provides sample informed consent language, aligned …
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.
… families and the scientific community to improve the informed consent process. … As public interest and expanded research … the risks. This makes properly understanding informed consent, the full knowledge of risks and benefits of …
Fact Sheet
Several regulations and policies stipulate the information that must be given to research participants prior to their enrolling in a study.
… The Big Picture:  Informed consent is crucial in research as it ensures individuals have … from de-identified specimens. The NHGRI Informed Consent Resource also describes some special considerations for …
For Patients and Families
List of resources to help you find accurate and reliable information on genetic and rare diseases.
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… Genetic Alliance The Access To Credible Genetics (ATCG) Resource Network has developed the Quality Assessment Toolbox …