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The National Human Genome Research Institute (NHGRI) is an institute of the
National Institutes of Health The National Institutes of Health (NIH) is the primary agency of the United States government responsible for biomedical and public health research. It was founded in 1887 and is part of the United States Department of Health and Human Service ...
, located in
Bethesda, Maryland Bethesda () is an unincorporated, census-designated place in southern Montgomery County, Maryland, United States. Located just northwest of Washington, D.C., it is a major business and government center of the Washington metropolitan region ...
. NHGRI began as the Office of Human Genome Research in The Office of the Director in 1988. This Office transitioned to the National Center for Human Genome Research (NCHGR), in 1989 to carry out the role of the NIH in the International Human Genome Project (HGP). The HGP was developed in collaboration with the
United States Department of Energy The United States Department of Energy (DOE) is an executive department of the U.S. federal government that oversees U.S. national energy policy and energy production, the research and development of nuclear power, the military's nuclear w ...
(DOE) and began in 1990 to sequence the
human genome The human genome is a complete set of nucleic acid sequences for humans, encoded as the DNA within each of the 23 distinct chromosomes in the cell nucleus. A small DNA molecule is found within individual Mitochondrial DNA, mitochondria. These ar ...
. In 1993, NCHGR expanded its role on the NIH campus by establishing the Division of Intramural Research (DIR) to apply genome technologies to the study of specific diseases. In 1996, the Center for Inherited Disease Research (CIDR) was also established (co-funded by eight NIH institutes and centers) to study the genetic components of complex disorders. In 1997 the
United States Department of Health and Human Services The United States Department of Health and Human Services (HHS) is a cabinet-level executive branch department of the US federal government created to protect the health of the US people and providing essential human services. Its motto is ...
(DHHS) renamed NCHGR the National Human Genome Research Institute (NHGRI), officially elevating it to the status of research institute – one of 27 institutes and centers that make up the NIH. The institute announced the successful sequencing of the
human genome The human genome is a complete set of nucleic acid sequences for humans, encoded as the DNA within each of the 23 distinct chromosomes in the cell nucleus. A small DNA molecule is found within individual Mitochondrial DNA, mitochondria. These ar ...
in April 2003, but there were still gaps remaining until the release of T2T-CHM13 by the Telomere-to-Telomere Consortium in 2022.


Organizational structure

NHGRI is organized into seven divisions and the Office of the Director. Four of these divisions support extramural research (the grant-giving side), one coordinates the intramural (on-campus) research arm of the institute, one deals with administration, management, and budget, and one serves as the public-facing side of the institute housing the communications, policy, and education teams.


History

* October 1, 1988 – The Office for Human Genome Research is created within the Office of the Director, National Institutes of Health (NIH). Also, NIH and the Department of Energy (DOE) sign a memorandum of understanding to "coordinate research and technical activities related to the human genome." * April 11, 1996 – Human DNA sequencing begins with pilot studies at six universities in the United States. * March 1999 – Large-scale sequencing of the human genome begins. * April 2003 – The National Human Genome Research Institute (NHGRI) celebrates the completion of the human genome sequence, the 50th anniversary of the description of the DNA double helix and the publication of the vision document for the future of genomics research. * May 4, 2007 – The National Human Genome Research Institute (NHGRI) and the
National Cancer Institute The National Cancer Institute (NCI) coordinates the United States National Cancer Program and is part of the National Institutes of Health (NIH), which is one of eleven agencies that are part of the U.S. Department of Health and Human Services. ...
(NCI), have teamed with
Group Health Cooperative Group Health Cooperative, formerly known as Group Health Cooperative of Puget Sound, later more commonly known as Group Health, was an American nonprofit healthcare organization based in Seattle, Washington. It was acquired by Kaiser Permanente in ...
in Seattle and
Henry Ford Health System Henry Ford Health is an integrated, not-for-profit health care organization in the U.S. state of Michigan. Headquartered in Detroit, Henry Ford Health is the second-largest health system in Michigan, operating 13 hospitals across the Detroit, Ge ...
in
Detroit Detroit ( , ) is the List of municipalities in Michigan, most populous city in the U.S. state of Michigan. It is situated on the bank of the Detroit River across from Windsor, Ontario. It had a population of 639,111 at the 2020 United State ...
to launch the Multiplex Initiative, a study to investigate the interest level of healthy, young adults in receiving
genetic testing Genetic testing, also known as DNA testing, is used to identify changes in DNA sequence or chromosome structure. Genetic testing can also include measuring the results of genetic changes, such as RNA analysis as an output of gene expression, or ...
for eight common conditions. * May 28, 2008 – Francis S. Collins steps down as director of the institute after serving for fifteen of the nineteen years of its operation.
Alan Edward Guttmacher Alan Edward Guttmacher (born 1949) is an American physician who was the director of the National Institute of Child Health (NICHD), one of the 27 institutes and centers that comprise the National Institutes of Health (NIH). In that capacity, he o ...
has been appointed acting director while a new permanent director is sought. * November 17, 2009 – NIH Appoints Eric D. Green, M.D., Ph.D. to be director of The National Human Genome Research Institute. It is the first time an institute director has risen to lead the entire NIH and subsequently picked his own successor.


Directors

List of NHGRI directors since 1989. Table notes:


CEER centers

In 1990 as part of the
Human Genome Project The Human Genome Project (HGP) was an international scientific research project with the goal of determining the base pairs that make up human DNA, and of identifying, mapping and sequencing all of the genes of the human genome from both a ...
, the NHGRI dedicated 5% of its annual budget to explore the ethical, legal, and social implications of genomic research. This program's current priorities focus on the ethical applications of genomics to as it applies to communities, families, and individuals in areas such as healthcare, research, defense, intellectual property, regulation, policy, and larger social issues. In 2004 the ELSI program established several Centers for Excellence in ELSI research (CEER). It was funded with substantial contributions from the U.S.
Department of Energy A ministry of energy or department of energy is a government department in some countries that typically oversees the production of fuel and electricity; in the United States, however, it manages nuclear weapons development and conducts energy-rela ...
and the
National Institute of Child Health and Human Development The ''Eunice Kennedy Shriver'' National Institute of Child Health and Human Development (NICHD) is one of the National Institutes of Health (NIH) in the United States Department of Health and Human Services. It supports and conducts research ai ...
. CEER centers have a common focus on the ethical, social, and legal implications resulting from the advances in genomic research. The initial centers were *
Case Western Reserve Case Western Reserve University (CWRU) is a private research university in Cleveland, Ohio, United States. It was established in 1967 by a merger between Western Reserve University and the Case Institute of Technology. Case Western Reserve Univ ...
University's Center for Genetic Research Ethics and Law (CGREAL); Eric Juengst, Ph.D., $5.3 million * The
Duke Duke is a male title either of a monarch ruling over a duchy, or of a member of Royal family, royalty, or nobility. As rulers, dukes are ranked below emperors, kings, grand princes, grand dukes, and above sovereign princes. As royalty or nobi ...
Center for the Study of Public Genomics; Robert Cook-Deegan, M.D., $4.8 million *
Stanford University Leland Stanford Junior University, commonly referred to as Stanford University, is a Private university, private research university in Stanford, California, United States. It was founded in 1885 by railroad magnate Leland Stanford (the eighth ...
School of Medicine's Center for Integration of Research on Genetics and Ethics; Mildred Cho, Ph.D., $3.8 million *
University of Washington The University of Washington (UW and informally U-Dub or U Dub) is a public research university in Seattle, Washington, United States. Founded in 1861, the University of Washington is one of the oldest universities on the West Coast of the Uni ...
's Center for Genomics and Healthcare Equality; Wylie Burke, M.D., Ph.D., $4.7 million This center is focused on equitable distribution and use of translational genome research in underserved and marginalized communities. CGHE has several cores working to address different lenses of
health disparities Health equity arises from access to the social determinants of health, specifically from wealth, power and prestige. Individuals who have consistently been deprived of these three determinants are significantly disadvantaged from health inequit ...
, genomic research, and outreach education. These cores include the Partnership core, the Genome Sciences core, the Healthcare Decision-making core and the Indigenous Genomics Alliance.


Funding

The NHGRI is publicly funded. In support of moving to a translational model, the NHGRI published their funding mechanisms for ELSI research. FY 2020 NIH funding was $650.6 million.


See also

* Julie Segre, chief and senior investigator of the Translational and Functional Genomics Branch *
Ellen Sidransky Ellen Sidransky is an American pediatrician and clinical geneticist in the Medical Genetics Branch of the National Human Genome Research Institute. She is chief of the Molecular Neurogenetics Section. Education Sidransky graduated magna cum la ...
, chief of the Molecular Neurogenetics Section * Tara Matise, Head of Computational Genetics at
Rutgers University Rutgers University ( ), officially Rutgers, The State University of New Jersey, is a Public university, public land-grant research university consisting of three campuses in New Jersey. Chartered in 1766, Rutgers was originally called Queen's C ...
and Director of the Coordinating Center for the NHGRI Genome Sequencing Program *
Talking Glossary of Genetic Terms The Talking Glossary of Genetic Terms is an audio/visual glossary of 256 terms prepared and hosted by the National Human Genome Research Institute in the United States.