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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 …
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 …
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 …
Clinical Research
The goal of this study is to learn more about the genetic contributions to the severity of disease of COVID-19.
… other COVID-19 related studies at the National Institutes of Health, visit: https://covid19.nih.gov/ . Si español es su … learn more about the genetic contributions to the severity of COVID-19. We hope to use this information to develop … to $70 for completing these study activities. Privacy and confidentiality are very important to us. We know this is …
The Genomics Landscape
In the April 2020 edition of The Genomics Landscape, NHGRI Director Eric Green provides an update on the final stage of the Genomics2020 strategic planning process; the NIH website for COVID-19 information, the Gene documentary debut on PBS and more.
… you are doing well in these very unusual times. The spread of the novel coronavirus, COVID-19, has upended our lives in … (COVID-19) Notice of transition to new system for issuing certificates of confidentiality for non-NIH funded research NIH & NHGRI News …