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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
For Patients and Families
List of resources to help you find accurate and reliable information on genetic and rare diseases.
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… Finding accurate and reliable information on genetic and rare diseases among the millions … users quickly discover, an enormous amount of health information is available online. The material provided is for … or usefulness of the opinions, advice, services, or other information provided. Moreover, we strongly recommend that …
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
Four NIH grants will support research on the ethical, legal and social questions raised by genomics research advances and genomic information.
… research and the increasing availability of genomic information. The awards will fund researchers at … program. … The projects will examine the use of genomic information in the prevention and treatment of infectious … and tackle subjects at the interface of ever-changing technology and medicine." The grants, totaling approximately …
For Patients and Families
The Genetic and Rare Diseases Information Center helps people find useful information about genetic and rare diseases.
… The Genetic and Rare Diseases Information Center helps people find useful information about genetic and rare diseases … The Genetic and Rare Diseases Information Center (GARD)  was created in 2002 by the …
About NHGRI
Information about how the NHGRI receives its funding and decides how to spend its annual budget.
… other organisms; ongoing research in genetic science and technology; and a broad program that explores the ethical, … creation of policy recommendations on the use of genetic information. The NHGRI budget provides funding for a dynamic … of the institute. Visit our Budget and Financial Information FAQ  for more information about how NHGRI is …
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 …