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Human Genome News, May 1994; 6(1)
The first HUGO International Genome Summit Meeting, hosted by the Human Genome Organisation (HUGO) and organized by HUGO President C. Thomas Caskey, was held in January in Houston. HUGO convened the meeting to identify common areas of interest and joint activities among various national and regional genome programs. Scientific and administrative delegates from 13 genome programs also defined areas where future international collaboration would be beneficial.
To set the scene for later discussions, the summit opened with overview presentations from four genome scientists. Kay Davies (University of Oxford, U.K.) outlined the development and future directions of the Human Genome Project, with Eric Lander (Whitehead Institute) discussing the importance of such model systems as the mouse. The current state of sequencing technology was summarized by Leroy Hood (University of Washington, Seattle), and John Sulston (Sanger Center, U.K.) discussed the international collaborative efforts to sequence the Caenorhabditis elegans genome.
Individual delegates presented brief summaries of their own genome programs and the contributions they could make to the international project. Countries and organizations represented were Australia; Canada; Commission of the European Union; France; Italy; Japan; Latin America; Netherlands; Russia; United Nations Educational, Scientific, and Cultural Organization; United Kingdom; United States; and the World Health Organization.
The presentations showed the many different efforts and initiatives that are moving the Human Genome Project forward. In addition to obvious differences in the size of individual national and regional programs, great variation in content, structure, and priorities also became apparent. Nevertheless, numerous common problems or concerns began to emerge, and these concerns were explored in more detail on the second day of the summit. Discussions were held under four broad headings: Databases; Ethical, Legal, and Social Issues (ELSI); Intellectual Property Rights; and Material Sharing.
Databases. Dialogues focused on the kind and quality of data currently being stored; the need for analyzing stored data in an increasing number of different ways (e.g., searching sequence data for biological motifs as well as for coding, noncoding, and regulatory regions); and on the growing likelihood that a single monolithic database will not be able to meet all future needs. An alternative possibility is to develop a federated system of databases, each transparently connected to the others. Scientists addressing biological questions to the database network would gain access to information stored in various formats in different databases; this information could then be integrated into a more meaningful whole. These summit considerations will provide invaluable input to HUGO scientists who formulate principles and policies for recommendation to the wider scientific community.
ELSI. Some participants pointed out that the promise of the Human Genome Project is accompanied by certain perils, pitfalls, and problems that no single approach can tackle. Multiple approaches are needed to develop international "best practices" in at least five key areas: counseling, choice, consent, control, and confidentiality. HUGO clearly has a coordinating role in this area and through its Ethics Committee will continue to address these challenges.
Intellectual Property Rights. On the question of patenting DNA, delegates expressed a lack of support for patenting full-length or partial sequences of undetermined function. This unanimous view was passed on to NIH Director Harold Varmus in hopes of aiding the decision about appealing the Patent and Trademark Office ruling. On February 11, NIH withdrew the applications from the appeals process. On February 12, the Medical Research Council followed suit. [For more information, see HGN 5(6), 6-7, 12 (March 1994).]
Material Sharing. Discussions centered largely on current arrangements for screening and distributing libraries. HUGO's coordination of data about the availability of libraries and screening facilities in all parts of the world has been hampered by only partial response from users, but the need for such coordination was reaffirmed.
Special Lectures. During the summit, Nancy Wexler (Columbia University) delivered the 1994 Jeanette Oshman Efron lecture. Her topic was the search for the Huntington's disease gene locus and implications for the public of the availability of personal genetic data. James A. Baker, III, former U.S. Secretary of State, presented a special lecture in which he used the development of foreign affairs policies to illustrate the importance of international collaboration for the Human Genome Project.
Article adapted from the HUGO Genome Digest.
The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v6n1).
The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.