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- Genetic Architecture of Complex Traits1
- Genome Technology Program5
- Human Genome Reference Program (HGRP)2
- Impact of Genomic Variation on Function (IGVF) Consortium3
- Encyclopedia of DNA Elements (ENCODE) Project1
- Molecular Phenotypes of Null Alleles in Cells (MorPhiC)1
- Genomic Innovator Awards2
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)3
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium2
- Developmental Genotype-Tissue Expression (dGTEx)1
- Multi-Omics for Health and Disease (Multi-Omics)1
- Ethical, Legal and Social Implications (ELSI) Research Program7
- Genomics-Enabled Learning Health Systems (gLHS)1
Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… An individual’s privacy should be respected when their genomic information is … uses. This page summarizes genetic and genomic privacy in these domains, along with information on the specific laws … information. In the United States, the applicable privacy protections rest heavily on how and why the information is …
News Release
Three practical strategies for reducing the risk of re-identification, the process by which anonymized personal genomic data are matched with the owner.
… key to the success of medical research, and participants in medical research are often those most eager to see their … to researchers has been a challenge. Recent advances in privacy technology have begun to make a difference in this … Related Content … The Beacon Project works towards privacy protections … Three practical strategies for reducing the …
Policy Issues
Federally-funded research with human participants must comply with regulations that protect the rights and welfare of the participants.
… The use of human participants in biomedical, clinical and social-behavioral research can … 45, Part 46 ). This regulation establishes rights and protections for participants in research. The Common Rule … such as the measures in place to protect participants' privacy, and under what circumstances information might be …
News Release
NIH submits new policy that requires all NIH-funded investigators who conduct sensitive, health-related research be issued Certificates of Confidentiality.
… Cures Act, enacted December 13, 2016, was to strengthen privacy protections law for research participants. The new law … or other identifying characteristics of research subjects in response to legal demands, such as subpoenas. More …
Policies and Guidance
NHGRI does not collect personally identifiable information about you on genome.gov unless you volunteer to provide it.
… Thank you for visiting genome.gov and reviewing our privacy policy. The U.S. Department of Health and Human … standard information automatically collected and stored in the Web server's logs) unless you choose to provide it to … or general issues related to genomics research and genomic medicine. In effort to bring science education to the …
News Release
NIH issues a final Genomic Data Sharing policy to speed the translation of data into knowledge, improve health and protect patient privacy.
… … The National Institutes of Health has issued a final NIH Genomic Data Sharing (GDS) policy to promote data sharing as … and procedures that improve health while protecting the privacy of research participants. The final policy was posted in the Federal Register Aug. 26, 2014 and published in the …
Policy Issues
Participating in genomics research is an opportunity to support exploration of the genome and help scientists understand, prevent, detect and treat disease.
… Participating in genomics research is an opportunity to support scientific … or access to a treatment in development. … A wide range of genomic research studies need participants, each with … that any risk to participants is minimized. How will my privacy be protected? Some genomics research is on …
News Release
Today, we are updating the way we manage data related to the NIH Genomic Data Sharing Policy.
… genomic summary results for most of the studies we support in order to advance health or further research purposes. … research and clinical care, with low risk to participants' privacy. However, because there could be a small risk of … types of research, most stakeholders agree that additional protections should be available for studies where there might …
News Release
Scientists are using an exciting gene editing tool called CRISPR/Cas9 to protect plants from harmful DNA viruses, strengthening the plant's protections.
… The CRISPR/Cas9 system has previously been adapted for use in many organisms, and this latest iteration develops … offers promising possibilities for the future of plant genomic engineering and suggests exciting methods to improve … plants from harmful DNA viruses, strengthening the plant's protections. ​ … Gene editing, CRISPR/Cas9, plant genomics, …
Clinical Research
The Institutional Review Board (IRB)Â is responsible for protecting the rights and welfare of the human subjects of research protocols that are conducted by intramural investigators in NHGRI and a number of other institutes.
… protocols that are conducted by intramural investigators in NHGRI and a number of other institutes. … Oversight for … located within the Office of Human Subjects Research Protections (OHSRP). The OHSRP promotes the protection of … of other institutes. … Human Subjects Research, Research Privacy, Privacy Of Research Participants, Clinical Trials, …