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News Release
NIH submits new policy that requires all NIH-funded investigators who conduct sensitive, health-related research be issued Certificates of Confidentiality.
… One goal of the 21st Century Cures Act, enacted December 13, 2016, was … information that is collected from participants as part of federally-funded research. … health-related human subjects research be issued Certificates of Confidentiality . Previously, NIH issued …
Talking Glossary
Scientific racism is a historical pattern of ideologies that generate pseudo-scientific racist beliefs.
… racism. Scientific racism is a historical pattern of ideologies that generate pseudo-scientific racist beliefs. … racism. Scientific racism is a historical pattern of ideologies that generate pseudo-scientific racist beliefs. … in the 19th and early 20th centuries were proponents of such ideologies. By the mid-20th century, …
Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… on the specific laws and policies that protect the privacy of genetic and genomic information. In the United States, the … When conducting genomics research, two essential values of scientific research should be balanced: the need to share … Data Sharing Policy  below). In addition, NIH issues Certificates of Confidentiality  to enable NIH-funded …
Clinical Research
This study explores how microbes, such as bacteria and fungi, contribute to a very common skin condition called Atopic Dermatitis, known as eczema.
… studies, we hope to lay the groundwork for development of more effective treatments for the disease. … We invite you or your child to join a research study of both healthy volunteers and patients with atopic dermatitis ("eczema") at the National Institutes of Health (NIH). We are trying to determine how microbes, …
Jobs at NHGRI
NHGRI is seeking applicants for the position of Program Director (PD) of Laboratory Genetics and Genomics (LGG) Fellowship & Director of Genetics Education (DGE), which plays a critical role in leading and overseeing all aspects of our ACGME-accredited programs.
… NHGRI is seeking applicants for the position of Program Director (PD) of Laboratory Genetics and Genomics (LGG) Fellowship & Director of Genetics Education (DGE). This key leadership position … the training program, ensuring it meets the requirements of ABMGG, ACGME, and other governing entities. Lead the …
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.
… encourages the broadest appropriate future use and sharing of genomic and phenotypic data.  Example 1: Consent for General Research Uses (GRU)  Portions of your samples, genomic data, and health information will be stored for an unlimited period of time to be used in future research. The research may be …
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 … statement that the study involves research, an explanation of the purposes of the research..." - 45 CFR 46.116 Potential participants … require information about "the expected duration of the subject's participation, a description of the …
FAQ
Frequently asked questions from the May 23, 2023 informational webinar, ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… data? NHGRI recognizes that methods for de-identification of qualitative data are developing, and existing tools may …  Guidance on de-identification from the Department of Health and Human Services NIST’s tools for … the National Cancer Imaging Archive The National Library of Medicine's clinical text de-identification tool  In some …
About NHGRI
NHGRI is advancing human health and spurring innovation by building bridges between our research laboratories and the academic, non-profit and private sectors.
… your organization can benefit from collaboration with some of the world's most respected scientists in the field of genomics and expand our efforts to improve human health. … microarrays for rapid molecular profiling, mouse models of inherited disorders and a diverse range of genes. …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… follows the NIH’s expectation for submission and release of scientific data, with the following exception: for genomic … Level 1: Initial sequence reads, the most fundamental form of the data after the basic translation of raw input Level 2: Data after an initial round of analysis …