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Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… should be respected when their genomic information is used for research, clinical applications or other uses. This page … subjects research; therefore, they are not subject to the informed consent requirements of the Common Rule. However, some groups …
Fact Sheet
Diversity among genomics research participants is essential for improving the health of everyone.
… a disease. So far, most people who have given permission for their DNA to be used for research are from European ancestry, making many populations from across the globe underrepresented in genomics research. The National Human Genome Research …
The Genomics Landscape
In the May 2020 edition of The Genomics Landscape, NHGRI Director Eric Green details how NIH is ramping up research on COVID-19; NHGRI's expansion of its Genome Technology Program; and the the DiY Genome: Unlocking Life's Code exhibition toolkit.
… meeting of the National Advisory Council on Human Genome Research (NACHGR) will be held as a videoconference rather … is being held remotely. Ironically, the other instance was for my very first NACHGR meeting! There I was in my rookie … starting at 12:30 p.m. EST to hear updates about NHGRI and genomics research more broadly.   All the best, … …
News Release
Four NHGRI researchers share the steps toward a career in genomics with 60 Brooklyn-area high school students.
… is a postdoctoral fellow in the National Human Genome Research Institute's (NHGRI) Social and Behavioral Research … Findley shared the steps she took towards her career in genomics with 60 Brooklyn-area high school students. She was … attended the day-long event, "Celebrating Genomics Careers for the Twenty-first Century," have been testing a curriculum …
Research at NHGRI
NHGRI researchers are creating foundational tools and methods to expand genomics research, ultimately leading to medical breakthroughs.
… diseases affect millions of Americans every day, and research is key to improving our ability to diagnose and … are creating foundational tools and methods to expand genomics research, ultimately leading to medical … are creating foundational tools and methods to expand genomics research, ultimately leading to medical …
News Release
A 2018 workshop led by Alaska Native people provides a path towards collaborative, community-driven genomics research.
… provides a path towards collaborative, community-driven genomics research. … In August 2020 the Centers for Disease Control and Prevention identified that Indigenous … Native people. These included sharing data without the consent of research participants and the lack of transparency …
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 … questionnaire, customer satisfaction survey, epidemiology research study, etc., we will maintain the information you … new initiatives in funding, or general issues related to genomics research and genomic medicine. In effort to bring …
News Release
A study published NIH researchers revealed that about half of individuals who said they don’t want to receive secondary genomic findings changed their mind after their healthcare provider gave them more detailed information.
… support the video tag. Animation of patient filling out an informed consent form and checking the "YES" checkboxes for both Expected Outcome and Secondary Findings. Credit: …
The Genomics Landscape
In the January 2024 issue of The Genomics Landscape, NHGRI Director Eric Green announces the appointment of Dr. Adam Phillippy as the founding director of the Center for Genomics and Data Science Research (CGDSR).
… yours — and here’s to a 2024 featuring many breakthrough genomics advances! Last year ended with exciting news from … Administration (FDA), which approved two gene therapies for the treatment of sickle cell disease. About 100,000 … of the genome for enhanced disease modelling.   This research was supported by a grant from the NHGRI Extramural …
Media Availability
Researchers have created a promising new method to accurately and more comprehensively analyze and interpret DNA sequence information from cancer patients.
… work is supported by the Clinical Sequencing Exploratory Research program at the National Human Genome Research … enable genomic profiling to become a more accessible tool for clinicians evaluating cancer patients. The researchers … have therapeutic, prognostic and diagnostic implications for cancer patients. The researchers subsequently devised an …