Human Genome Organisation

HUGO was established at the first meeting on genome mapping and sequencing at Cold Spring Harbor in 1988. The idea of starting the organization stemmed from South African biologist Sydney Brenner,{{cite journal |last1=Mckusick |first1=V |title=The human genome organisation: History, purposes, and membership |journal=Genomics |date=August 1989 |volume=5 |issue=2 |pages=385–387 |doi=10.1016/0888-7543(89)90077-3|pmid=2676842 }} who is best known for his significant contributions to work on the genetic code and other areas of molecular biology, as well as winning the 2002 Nobel Prize in Physiology or Medicine.{{cite journal|last1=Friedberg|first1=Errol|title=Sydney Brenner (1927-2019) Mischievous steward of molecular biology's golden age|journal=Nature|volume=568|issue=7753|year=2019|pages=459|issn=0028-0836|doi=10.1038/d41586-019-01192-9|pmid= 30988427 |author-link=Errol Friedberg|doi-access=free}}

A Founding Council was elected at the meeting with a total of 42 scientists from 17 different countries, with Victor A. McKusick serving as founding President. In 2016, HUGO was located at the EWHA Womans University in Seoul, South Korea.{{cite web |last1=Peterson |first1=Joyce |title=JAX Genomic Medicine Scientific Director Charles Lee named president of international Human Genome Organization (HUGO) |url=https://www.jax.org/news-and-insights/2016/march/charles-lee-named-president-of-human-genome-organization# |website=The Jackson Laboratory |access-date=4 September 2020 |language=en}} In 2020, the HUGO headquarters moved to Farmington, Connecticut, US.

HUGO has convened a Human Genome Meeting (HGM) every year since 1996.{{cite web |title=Human Genome Organisation (HUGO) International Ltd. - Human Genome Meeting |url=http://www.hugo-international.org/Human-Genome-Meeting |website=www.hugo-international.org |access-date=4 September 2020}}

In partnership with geneticist Yuan-Tsong Chen and Alice Der-Shan Chen, founders of the Chen Foundation, HUGO presents the Chen Award to those with research accomplishments in human genetics and genomics in Asia Pacific.{{cite web |url= http://www.hugo-international.org/Chen-Award |title= Chen Award |author= |website= Human Genome Organisation |access-date= 2 March 2020 |archive-date= 21 February 2020 |archive-url= https://web.archive.org/web/20200221013445/http://www.hugo-international.org/Chen-Award |url-status= dead }}

In 2020, HUGO merged with the Human Genomic Variation Society (HGVS) and Human Variome Project (HVP).

• Ada Hamosh (US) – 2023–present
• Charles Lee (South Korea, US) – 2017 to 2023
• Stylianos Antonarakis (Switzerland) – 2012 to 2017
• Edison Liu (Singapore) – 2007 to 2012
• Leena Peltonen (Finland) – 2005 to 2007
• Yoshiyuki Sakaki (Japan) – 2002 to 2005
• Lap-Chee Tsui (Canada) – 2000 to 2002
• Gert‐Jan van Ommen (Netherlands) – 1998 to 1999
• Grant Sutherland (Australia) – 1996 to 1997
• Thomas Caskey (US) – 1993 to 1995
• Walter Bodmer (UK) – 1991 to 1993
• Victor McKusick (US), Founding President – 1988 to 1991

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HUGO's Committee on Ethics, Law and Society (CELS) is an interdisciplinary academic working group that is a uniquely positioned to analyse bioethical matters in genomics at a conceptual level and with an international perspective. To this end, CELS mission is to explore and inform professional discourse on the ethical aspects of genetics and genomics, normally though scholarly engagement, thought-provoking papers, and policy guiding statements.{{Cite web |last=International |first=HUGO |title=HUGO Ethics |url=https://www.hugo-international.org/ethics/ |access-date=2024-08-22 |website=HUGO International |language=en-US}}

The first meeting of the HUGO Ethics Committee took place in Amsterdam in October 1992, chaired by Nancy Wexler (Columbia University). In 2010, under the leadership of then HUGO president Edison Liu (The Jackson Laboratory) and a new chair Ruth Chadwick (Cardiff University), the committee became the HUGO Committee on Ethics, Law and Society (CELS). Benjamin Capps was nominated to be the present chair at the HUGO Human Genome Meeting, held in Barcelona in 2017.{{Cite web |last=International |first=HUGO |title=Human Genome Meeting |url=https://www.hugo-international.org/human-genome-meeting/ |access-date=2024-08-22 |website=HUGO International |language=en-US}}

2017–present: [https://medicine.dal.ca/departments/department-sites/bioethics/people/benjamin-capps.html Benjamin Capps] (UK, Canada)

2010–2017: Ruth Chadwick (UK)

1996–2008: Bartha Knoppers (Canada)

1992–1996: Nancy Wexler (US)

The Human Genome Organisation (HUGO) and a vision for Ecogenomics: the Ecological Genome Project ([https://humgenomics.biomedcentral.com/articles/10.1186/s40246-023-00560-x Human Genomics] 17: 115), 2023

The Human Genome Organisation (HUGO) and the 2020 COVID-19 pandemic ([https://humgenomics.biomedcentral.com/articles/10.1186/s40246-021-00310-x Human Genomics] 15:12), 2021

Statement on Bioinformatics and Capturing the Benefits of Genome Sequencing for Society ([https://humgenomics.biomedcentral.com/articles/10.1186/s40246-019-0208-4 Human Genomics] 13, 24), 2019

Falling giants and the rise of gene editing: ethics, private interests and the public good ([https://humgenomics.biomedcentral.com/articles/10.1186/s40246-017-0116-4 Human Genomics] 11, 20), 2017

Ethical issues of CRISPR technology and gene editing through the lens of solidarity ([https://academic.oup.com/bmb/article/122/1/17/3045812 British Medical Bulletin] 122(1): 17-29), 2017

Imagined Futures: Capturing the Benefits of Genome Sequencing for Society ([https://www.researchgate.net/publication/277313672_Imagined_Futures_Capturing_the_Benefits_of_Genome_Sequencing_for_Society?channel=doi&linkId=5567720608aeccd77737899f&showFulltext=true Technical Report]) 2013

Statement on Supreme Court: Genes are not Patentable, June 2013

Statement on Pharmacogenomics (PGx): Solidarity, Equity and Governance ([https://lsspjournal.biomedcentral.com/articles/10.1186/1746-5354-3-1-44 Life Sciences, Society and Policy] 3, 44), April 2007

Statement on Stem Cells ([https://www.eubios.info/hugostem.pdf Eubios Ethics Institute]), November 2004

Statement on the scope of gene patents, research exemption, and licensing of patented gene sequences for diagnostics (Journal international de bioéthique et d'éthique des sciences, Sep-Dec;14(3-4): 201-5), 2003

Statement on Human Genomic Databases ([https://www.eubios.info/HUGOHGD.htm Eubios Journal of Asian and International Bioethics] 13: 99), December 2003

Statement in Gene Therapy Research ([https://www.eubios.info/GENTHER.htm Eubios Journal of Asian and International Bioethics] 11: 98-99), April 2001

Statement on Benefit Sharing ([https://onlinelibrary.wiley.com/doi/abs/10.1034/j.1399-0004.2000.580505.x?sid=nlm%3Apubmed Clinical Genetics] 58(5): 364-6), April 2000

Statement on Cloning ([https://www.eubios.info/HUGOCLON.htm Eubios Journal of Asian and International Bioethics] 9: 70), March 1999

Statement on DNA Sampling: Control and Access ([https://www.eubios.info/HUGO2.htm Eubios Journal of Asian and International Bioethics] 8: 56-57), February 1998

Statement on the Principled Conduct of Genetics Research, [http://hrlibrary.umn.edu/instree/geneticsresearch.html March] 1996

• HUGO Gene Nomenclature Committee
• Victor A. McKusick
• Ira Carmen
• List of genetics research organizations
• International Mammalian Genome Society

{{Reflist}}

• [http://www.hugo-international.org/ HUGO homepage]
• [https://www.genenames.org/ HGNC homepage]
• [https://www.hugo-international.org/ethics/ CELS homepage]

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Category:Genomics organizations

Category:International medical and health organizations

Category:International organisations based in Switzerland