Mapping Public Policy for Genetic Technologies

Appendix G. Genome Projects

Genomics research has had a short but impressive history. Fueled by the immense potential inherent in ultimately understanding how differences in gene sequences affect human health, a worldwide initiative to sequence the entire human genome was begun in the mid-1980s. The governments of the United States, Japan and several European countries established laboratories and funding sources devoted to genome sequencing. In the United States, Congress officially launched the Human Genome Project by appropriating funds to both the Department of Energy (DOE) and the National Institutes of Health (NIH). The agencies then created both separate and joint multi-disciplinary committees and working groups to administer the project.

The focus of the Human Genome Project is the characterization of the human genome — the complete collection of human genetic material, including the estimated 100,000 or more genes contained in human DNA. While the DOE efforts are concentrated in three national laboratories respected for their expertise in technology and technology development, the NIH initiative has evolved into the National Institute for Human Genome Research (NHGRI), an independent funding unit with authority to award grants and contracts.

The stated goals of the U.S. Human Genome Project include:

Creating genetic and physical maps of the human genome;
Refining methods for gene identification;
Completing the sequencing of the genomes of specific animal models and organisms;
Creating and operating databases and database tools that provide easy access to mapping and sequencing data (and that help to interpret the data); and
Examining the ethical, legal and social implications of the Human Genome Project.

Similar efforts to study the human genome have been launched in Great Britain, France, Italy, Japan and other countries. In order to coordinate these multiple international efforts, the Human Genome Organization (HUGO) was created in 1988.

In general, the gene sequences discovered in publicly funded research are filed in public databases, notably GenBank (maintained by the U.S. National Center for Biotechnology Information at the National Library of Medicine).

Figure G-1 shows how the total amount of generally available genetic information has grown exponentially since the beginning of the decade.

ChartObject Figure G-1: Gene Sequence Data on File in GenBank

This research has amassed far more information on human genes than on any other organism, but there are many other objects of study, as well. These include mice, the nematode worm Caenorhabditis elegans (perhaps the best understood of the world’s many-celled organisms), algae, brewer’s yeast, the fruit fly, human intestinal bacteria, the rat, rice, and a number of others. Each organism teaches lessons that can be applied to understanding human biology.

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