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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.
… Sheena Faherty, Ph.D. … One goal of the 21st Century Cures Act, enacted December 13, 2016, was … health-related human subjects research be issued Certificates of Confidentiality . Previously, NIH issued these certificates …
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 … Data Sharing Policy  below). In addition, NIH issues Certificates of Confidentiality  to enable NIH-funded researchers to limit …
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 … to data is controlled and data security standards are met, confidentiality cannot be guaranteed, and reidentified data …
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 … of our participants is protected through a Certificate of Confidentiality from the National Institutes of Health. This …
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.
… minorities. … 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 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 … storing, sharing, and future use of data and samples (see Confidentiality (including privacy and identifiability) , … for health insurance and employment purposes.  Certificates of Confidentiality (CoCs) are another mechanism …
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 … Genomic Data Sharing Policy and the NIH Policy for Issuing Certificates of Confidentiality . … What metadata should be included with …
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 … and 2) protective measures such as de-identification and Certificates of Confidentiality would be insufficient. NHGRI encourages …
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. … with a CRADA share the responsibilities regarding CRADA confidentiality particularly in relationship to other …