User:HUmanGenomeOrg/Sandbox

The Human Genome Organisation (HUGO) is an international non-governmental organization of scientists involved in human genetic and genomic research. Established in 1989 by a collection of the world's leading human geneticists, the primary ethos of the Human Genome Organisation is to promote and sustain international collaboration in the field of human genetics.

Through its working committees and principles, HUGO promotes its activities and ideals to both today's and tomorrow's scientists.

HUGO (London), a company limited by guarantee, was established in 1990 to further the purposes of HUGO (The Human Genome Organisation) an association formed in 1989 in Geneva, Switzerland. HUGO (London), the European regional office of HUGO, has the same non-profit making aims and objectives as HUGO:


 * to assist with the co-ordination of research on the human genome and in particular to foster collaboration between scientists with a view to avoiding unnecessary competition or duplication of effort; to co-ordinate this research with parallel studies in model organisms;


 * to co-ordinate and to facilitate the exchange of data and bio-materials relevant to human genome research and, through a training programme, encourage the spreading of the related technologies; and


 * to encourage public debate and provide information and advice on the scientific, ethical, social, legal and commercial implications of human genome projects. HUGO (London) was incorporated in the UK on 16 March 1990 and was granted charitable status on 20 February 1992 (Registered Charity Number 1008230)

Mission Statement

 * to investigate the nature, structure, function and interaction of the genes, genomic elements and genomes of humans and relevant pathogenic and model organisms;
 * to characterise the nature, distribution and evolution of genetic variation in humans and other relevant organisms;
 * to study the relationship between genetic variation and the environment in the origins and characteristics of human populations and the causes, diagnoses, treatments and prevention of disease;
 * to foster the interaction, coordination, and dissemination of information and technology between investigators and the global society in genomics, proteomics, bioinformatics, systems biology, and the clinical sciences by promoting quality education, comprehensive communication, and accurate, comprehensive, and accessible knowledge resources for genes, genomes and disease; and,
 * to sponsor factually-grounded dialogues on the social, legal, and ethical issues related to genetic and genomic information and championing the regionally-appropriate, ethical utilization of this information for the good of the individual and the society.

A New Direction
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HUGO Council
As determined by the Articles and Bylaws, the members of HUGO constitute the General Assembly, its "supreme body." The executive body for HUGO is the 18-member Council which at the beginning will be constituted by the president, 3 vice-presidents, and 5 elected members of the executive committee established at Montreux, plus 9 members chosen by the membership in an election to be held later this year. The term of service of Councillors will be 3 years (with an option for a single 3-year term in immediate succession). Six Councillors will retire annually; 4 replacements will be elected by the membership and 2 co-opted by the Council.

From among its members, the Council will elect the president and 3 vice-presidents of HUGO. The secretary and treasurer are to be ex officio, nonvoting members of the Council. They will be elected by the Council but may not necessarily be members of HUGO.

HUGO will conduct an election of new members annually. For the election to be held later this year, nominations should be submitted to the Secretary or President. Nominations should be endorsed by 6 HUGO members, no more than 3 of whom can be residents of the same country as the nominee.

Council Members

 * Prof Stylianos Antonarakis (Switzerland)
 * Dr Elspeth Bruford (UK)
 * Prof Ruth Chadwick (UK)
 * Prof Aravinda Chakravarti (USA)
 * Dr David R. Cox (USA)
 * Prof Takashi Gojobori (Japan)
 * Dr Yoshihide Hayashizaki (Japan)
 * Prof Veronica van Heynigen (UK)
 * Dr Gerardo Jiménez-Sánchez (Mexico)
 * Dr Dhavendra Kumar (UK)
 * Prof Doron Lancet (Israel)
 * Dr Felix Li Jin (China)
 * Prof Edison Liu (Singapore) President
 * Prof Mark McCarthy (UK)
 * Dr Stephen Scherer (Canada)
 * Dr Todd Taylor (Japan)
 * Dr Martin Vingron (Germany)
 * Prof Emma Whitelaw (Australia)

Purposes

 * to promote discussion and understanding of social, legal and ethical issues as they relate to the conduct of, and the use of knowledge derived from, human genome research. This may encompass consideration of research directions, practices and results, and the issues of human diversity, privacy, and confidentiality, intellectual property rights, patents, and commercialisation, disclosure of genetic information to third parties, the non-medical use of such information, and the medical, legal and social aspects of testing, screening, accessibility, DNA banking, and genetic research;
 * to act as an interface between the scientific community, policy makers, educators, and the public;
 * to foster greater public understanding of human variation and complexity;
 * to collaborate with other international bodies in genetics, health, and society with the goal of disseminating information;
 * to deliberate about policy issues in order to provide advice to the HUGO Council and to issue statements where appropriate;
 * to report on its activities at least annually to the HUGO Council: and to act on any other related matter.

Ethics Committee Members

 * Professor Ruth Chadwick (UK) Committee Chair
 * Kare Berg (Norway)
 * Abadallah Daar (Canada)
 * Kazuto Kato (Japan)
 * Daryl Macer (Thailand)
 * Thomas Murray (USA)
 * Ishwar Verma (India)
 * John J. Mulvihill, MD (U.S.A)

HUGO Gene Nomenclature Committee
For each known human gene the HUGO Gene Nomenclature Committee approve a gene name and symbol (short-form abbreviation). All approved gene symbols are stored in the HGNC Database. Each symbol is unique and the HGNC ensure that each gene is only given one approved gene symbol. It is necessary to provide a unique symbol for each gene so that we and others can talk about them, it also facilitates electronic data retrieval from publications. In preference each symbol maintains parallel construction in different members of a gene family and can also be used in other species, especially the mouse. The HGNC have already approved over 24,000 symbols for protein-coding genes, pseudogenes, RNAs, phenotypes and genomic features. Their current priority is assigning nomenclature to the estimated 3,000 unnamed protein coding human genes, especially those identified by the CCDS project. In addition to these, individual new symbols are requested by scientists, authors submitting to journals that insist on the use of approved gene nomenclature (e.g. Nature Genetics, Genome Research, Genomics) and other databases that use HGNC gene symbols (e.g. Ensembl, Entrez Gene, UniProt). In all cases considerable efforts are made to use a symbol acceptable to workers in the field.

History
Problems of nomenclature in human genetics were recognised as early as the 1960s and in 1979 full guidelines for human gene nomenclature were presented at the Edinburgh Human Genome Meeting (HGM). Since then we have continued to strike a compromise between the convenience and simplicity required for the everyday use of human gene nomenclature and the need for adequate definition of the concepts involved.

The committee has grown from a single force (Dr Phyllis J. McAlpine) to a team of post-docs and bioinformaticians. For eleven years, from 1996-2007, the HGNC was chaired by Professor Sue Povey and based at University College London (UCL). In September 2007 the HGNC relocated to the European Bioinformatics Institute (EBI), to join the PANDA (Protein and Nucleotide Database) group. We regularly attend international meetings such as HUGO's Human Genome Meeting (HGM) and the American Society of Human Genetics (ASHG) conference, and sometimes hold workshops in conjunction with these. This ensures that we are approving gene names in line with the needs of the scientific community.

Organisation
We are a non-profit making body which is jointly funded by the Wellcome Trust (UK) and the US National Human Genome Research Institute (NHGRI). We operate under the auspices of The Human Genome Organisation (HUGO), with key policy advice from an International Advisory Committee (IAC). We also use a team of specialist advisors who provide support on specific gene family nomenclature issues, and work in close collaboration with staff at MGNC and RGNC.

Confidentiality
All enquiries are handled confidentially and unpublished information is never disclosed without explicit permission from the submitters. Further information regarding confidentiality can be found on the HGNC Website

Committee Members

 * Dr Elspeth Bruford
 * Group Co-ordinator


 * Dr Matthew Wright
 * Senior Gene Nomenclature Advisor


 * Dr Ruth Seal
 * Gene Nomenclature Advisor


 * Ms Louise Daugherty
 * Database Curator


 * Dr Michael Lush
 * Bioinformatics Support

Committee Members

 * Prof Joseph Straus (Germany),
 * Prof Charles Auffray (France) Chairperson
 * Prof Jean-Jacques Cassiman (Belgium)
 * Dr Peter N Goodfellow (UK)
 * Dr Tim Harris (USA)
 * Prof Ulf Landegren (Sweden)
 * Prof Eric S Lander (USA)
 * Dr Hatushi Shimizu (Japan)
 * Dr Sandy Thomas (UK)
 * Mr Jacques Warcoin (France)

HUGO Committee for Education and Public Awareness in Genomics
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Committee Members

 * Dr Elza Khusnutdinova (Russia) Chairperson
 * Prof Nick Yankovsky (Russia)
 * Dr Ian Craig (UK)
 * Dr Gert-Jan van Ommen (The Netherlands)

Statements
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Conferences & Workshops
Please see the Conferences section of the HUGO website for information on forthcoming HUGO conferences, workshops and meetings.

Collaborations
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Publications
The HUGO Journal is published by Springer

History, Purposes and Membership – Dr. Victor A. McKusick, 1989, Genomics
The Human Genome Organisation (HUGO) was conceived in late April 1988, at the first meeting on genome mapping and sequencing at Cold Spring Harbor. For some time, as the genome initiatives got under way in individual nations, the need for an international coordinating scientific body had been under discussion. The idea of HUGO was particularly Sydney Brenner's. He also suggested the name of the organization and its rather felicitous acronym.

At a rump session called to discuss the proposal at Cold Spring Harbor on April 30, 1988, Victor McKusick (Baltimore) was asked to serve as founding president. A Founding Council was assembled from among those at the Cold Spring Harbor meeting, supplemented by others, to a total of 42 scientists from 17 countries. In early September 1988, 31 of these scientists met in Montreux, Switzerland, at a hotel within sight of the historic Chateau de Chillon. (FIG 2) The members of the Founding Council are indicated by an asterisk in the list of HUGO members at the end. The officers elected at Montreux were as follows: Victor A. McKusick, President; Walter Bodmer, Jean Dausset, and Kenichi Matsubara, Vice-Presidents; John Tooze, Secretary; Walter Gilbert, Treasurer (resigned February, 15, 1989); and Charles Cantor, Malcolm Ferguson-Smith, Leroy Hood, Lennart Philipson, and Frank Ruddle, Elected Members to Executive Committee.

The Founding Council of HUGO, in Montreux, September 7, 1988 (11 members were absent). First row: Matsubara, Shows, Tocchini-Valentini, Honjo, Shimizu, McKusick, Lyon, Gilbert, Cantor, Robson, Karpov (observer). Second row: Hirt, Ruddle, Collins, Zinder, Sutherland, Cavenee, Hinton (staff), Tooze, Hood, Frézal, Cahill, Ferguson-Smith. Third row: Pearson, Dulbecco, Philipson, Jacob, Mirzabekov, Goodfellow (observer), Dausset, Watson, Worton, Southern, Strayer (staff), Grzeschik.

HUGO is incorporated in Geneva, Switzerland. As stated in its Articles of Association, "membership of HUGO shall be open to all persons concerned with the human genome or other scientific subjects related to it." It was decided in Montreux to follow an academy model, i.e., to have a limited and elected membership. In elections conducted by mail during the 5 months after Montreux, 178 additional members of HUGO were chosen, bringing the total to 220.