Original Repository: Alan Mason Chesney Medical Archives. Victor Almon McKusick Collection
Reproduced with permission of Anne B. McKusick.
Medical Subject Headings (MeSH):
Human Genome Project
Medical Genetics, Molecular Biology, and the Human Genome Project, 1980-2008
The Human Genome Organization (September 7, 1988)
June 21, 1989
As Founding President of the Human Genome Organization (HUGO), I am writing to you to request consideration by HHMI of foundation
funding to help us initiate our program for international coordination of the human genome project. We are grateful to the
support which the HHMI has provided for the initial steps in forming HUGO; that support has come, as I understand it, from
your second program. The additional support which I am requesting hereby will initiate the programs which we have planned
for HUGO and will place us in a better position of achieving multinational governmental funding for the long range.
You are probably familiar in general with HUGO because of the support which HHMI has already provided. I am including herewith
a reprint of my paper "Mapping and sequencing the human genome" which appeared in the New England Journal of Medicine,
April 6, 1989. This has a bit on HUGO and how it fits into the total picture. In addition, I am enclosing a preprint of
a description of HUGO which will be published in GENOMICS in August.
The history of HUGO is a short one: the suggestion of an international coordinating organization was raised at a Cold Spring
Harbor meeting on the genome in late April, 1988 -- by Sydney Brenner of Cambridge University, who also suggested the name
Human Genome Organization and the acronym HUGO. At a rump session held in Cold Spring Harbor on April 30, 1988, I was asked
to convene an international group to consider the proposal in more detail. A founding council of 42 members met in Montreux,
Switzerland, in early September, 1988; 31 of the members were present. The broad outline for articles of incorporation and
bylaws was laid out and the following officers were elected: President, Victor McKusick; Vice presidents, Walter Bodmer, Jean
Dausett, and Kenichi Matsubara; Secretary, John Tooze; Treasurer, Walter Gilbert (resigned February, 1989; replaced by George
Cahill, June 1989); others of executive committee, Charles Cantor, Malcolm Ferguson-Smith, Leroy Hood, Lenart Philipson, Frank
We are finally incorporated in Geneva and expect to have the necessary legal representative in this country under the laws
of the State of New York.
Our overall purposes are three: the first is to provide coordination of the human genome initiative -- among nations, among
scientific disciplines and among scientists working on the human genome and those working on the genomes of model organisms.
A second objective is to enhance the progress and usefulness of the human genome effort by ensuring open access to the data
generated by the project and the ready availability of biomaterials and technology to conduct the research.
A third objective is to provide a forum for the discussion of ethical, societal, legal, political, commercial and other implications
of the human genome project, the information which it will generate, and the uses to which that information may be put.
To implement the above objectives we have taken steps to establish three HUGO offices: one in London, one in Bethesda, and
one in Osaka. We are in the process of setting up five standing committees: 1) committee on physical mapping, 2) committee
on data bases, 3) committee on the mouse genome, 4) committee for Human Gene Mapping Workshops, and 5) committee on ethical
and societal issues.
At its meeting in Montreaux, the HUGO Founding Council decided to follow an "academy model" in setting up HUGO. By
this it is meant that we will have membership elected on merit. In the conduct of the work of HUGO, it is understood that
some persons will be co-opted to the several committees who are themselves not members of HUGO. In this respect, we will
follow the well-known practice of similar academies in setting up work parties.
We see the regional offices as filling, in time, an important role in the collection and distribution of data through networking.
The offices will be expected to maintain information on the characteristics and availability of biomaterials and technology.
There have been a total of 10 Human Gene Mapping Workshops, the first in 1973 and the most recent in New Haven earlier this
month. These have been very useful in collating the information on the genetic map, but the meetings themselves have reached
the size and complexity and the body of information which they attempt to collate has become so large that a major change
in the workshops is necessary. It is no longer possible for the upkeep and evaluation of the data to be done on an intermittent
(every other year or even annual) basis, and it is not possible for a convener who is himself an active scientist to administer
it on a rotating basis. At the New Haven meeting earlier this month, it was voted by the executive committee of the Human
Gene Mapping Workshops to become a component of HUGO. HUGO in turn voted at its meeting to take on the Human Gene Mapping
Workshops as part of its administrative and scientific responsibility.
Discussions of the human genome project in broad terms, in the Advisory committee to Jim Watson's Office on Human Genome
Research, have led to the conclusion that the unit of scientific management for the project is the individual chromosome,
or in the case of large chromosomes, the individual chromosome arm. The advisory committee looks to HUGO for leadership in
the establishment of work parties which will have responsibility for the organization of the information forthcoming on the
mapping and sequencing of each chromosome, which will have oversight of the special biomaterials, e.g., cell lines and probes,
relevant to the particular region of the genome, and which will have some responsibility for achieving "closure" in
terms, for example, of achieving a complete set of overlapping cloned DNA segments. This scheme is based very much on that
used by the Human Gene Mapping Workshops which at each of the meetings has had committees responsible for collecting information
on a given chromosome. The only difference conceived here is that these will be standing committees that communicate among
their members and with overall organization by electronic means and that will have responsibility not only for the linkage
mapping but also for the physical mapping related to the particular chromosome. There is clearly no intention to assign,
in any monopolistic sense, a given chromosome to a given country or laboratory. Depending on competence and interest, however,
particular laboratories and particular countries might be asked to take the lead in organizing the work party and assuming
the responsibilities outlined above. HUGO is seen as the appropriate body to undertake this organization of chromosome-by-chromosome
work particles. HUGO will need to assume the expenses of the networking of the members of individual groups, of any meetings
they may wish to hold, etc.
We are also keen on mounting a substantial fellowship training program. We see this as a major way to increase the manpower
necessary for the human genome initiative as well to provide increased expertise in the area of molecular biology and biotechnology
in general. Training funds are limited these days. We have in mind the importance of providing such training on a worldwide
In general, we do not see HUGO as a research grant-giving agency, except in the fellowship/training realm and the support
of programs to coordinate data bases and to conduct the work of the chromosome work parties.
So far, I have been able to raise $51,000 from Dupont, Markey, The Wesley Foundation, and other sources. Italy and Australia
are considering a $200,000 award each, the latter possibly for each of three years. We have been in contact with several
other potential donors most of whom have, unfortunately, declined for the present.
It is my hope that HUGO will be able to raise $500,000 from each of the Western European and Pacific rim areas. We would
very much like the HHMI to initiate this effort with a sum of $1,500,000 as the first major donor for this world effort.
This would, I feel, catalyze other donors as well as permitting HUGO to get on with the implementation of its programs.
In informal discussions with George Cahill, he mentioned that in view of the extensive involvement of HHMI in genetics research,
support for the HUGO might be considered eligible as part of the direct participation. I have spelled out in some detail
the nature of our programs in hopes that it will be helpful to you in arriving at that decision.
As I mentioned earlier, George Cahill has assumed the position of treasurer of HUGO in our election earlier this month. We
have a total of 219 members and an election for additional members and for the 18-member council will be held during the next
The enclosed materials will provide you with details concerning HUGO.
Thank you for your consideration of this proposal, and very best personal regards.