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News Release
NIH issues a final Genomic Data Sharing policy to speed the translation of data into knowledge, improve health and protect patient privacy.
… available only for research purposes consistent with the consent provided by participants in the original study. Under … GDS policy is the expectation that researchers obtain the informed consent of study participants for the potential … to knowledge, Human Genome Project, GWAS policy, dbGaP, Informed consent … NIH issues a final Genomic Data Sharing …
News Release
The Clinical Sequencing Exploratory Research Consortium has offered an ethical framework to guide pediatricians in pursuing clinical sequencing studies.
… risk for disease in patients who are too young to give informed consent. … In a new analysis, a working group of the Clinical … and Society. By definition, young children cannot give informed consent for any medical procedure; very young …
Policies and Guidance
NHGRI does not collect personally identifiable information about you on genome.gov unless you volunteer to provide it.
15 Ways Genomics Influences Our World
Advances in genomics are helping you access information about your genome from your home.
… ethical questions. Since children may not be able to consent to such a test and/or they might be unable to fully …
News Release
On March 16, Rep. Louise M. Slaughter (D-N.Y.), lead author of the Genetic Information Nondiscrimination Act of 2008 (GINA), passed away at the age of 88.
Staff
Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome Research Institute (NHGRI)
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… … Elena Ghanaim, NIH Genomic Data Sharing (GDS) Policy, Informed Consent, health privacy regulations, human research …
Staff
Cristina Kapustij was the chief of the Policy and Program Analysis Branch at the National Human Genome Research Institute until June 2024.
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… … Elena Ghanaim, NIH Genomic Data Sharing (GDS) Policy, Informed Consent, health privacy regulations, human research …
15 Ways Genomics Influences Our World
Genomics is fostering an appreciation for what our DNA means for our health, identities and culture.
… major areas of study in ELSI research  are questions about consent and privacy. For example, what do you need to know … your DNA before you agree to participate? That's called " informed consent ." As new areas of genomics have developed in recent …
The Genomics Landscape
In the December 3, 2020 edition of The Genomics Landscape, Dr. Eric Green spotlights on ELSIhub.
… utility of generated data while maintaining privacy and consent. In an effort to improve data sharing in biomedical …
Event
On December 11, 2023, NHGRI, in collaboration with several other NIH Institutes and Offices, recently renewed the three Notices of Funding Opportunity (NOFOs) used to support investigator-initiated research on the ethical, legal and social implications (ELSI) of human genome research.