Mapping the Territory

The Human Genome Diversity Project searches for cures, not profits


| March-April 1996



This is part of a series of essays on bioprospecting and biopiracy. The other essays are: “Bioprospecting or Biopiracy?”; “High-Tech Piracy”; “Pharmaceutical Giant Shares the Wealth”; “Transnationals With a Conscience”; and “Biodiversity Resources”. 

“Bioprospecting” raises its most important issues when the “bio” is human. The Human Genome Diversity Project, an international effort to learn more about the 5.5 billion different human genomes, has proposed some innovative ways to deal with these issues. Although the project has been branded a “biopirate,” it is in fact part of the solution, not part of the problem.

Start with “human-based biotechnology.” There have for decades been medical and scientific “inventions” derived from human biological materials. In recent years, these inventions have led to patents on human genetic sequences, human proteins, and human cell lines, which are self-reproducing sets of particular kinds of human cells. These are all patents on biological materials derived from humans that were discovered, purified, and found to have some plausible use. They are not patents on humans. No one seems to have tried to patent a “genetically altered” human; there are good legal reasons (and better political ones) to doubt that such a patent would ever be granted.

This human-based biotechnology has become more important with the explosion of knowledge about human genes. The Human Genome Project, begun in 1990, is a planned 15-year international cooperative effort to first map and then sequence—spell out—all 3 billion base pairs (letters) of the human genetic code. The project receives nearly $200 million per year in funding from the U.S. government alone. Through the Human Genome Project and other research, we now know a great deal about human genes and human disease. Some of that knowledge will be translated into products that will help save or improve lives—and generate profits for private companies.

So far, most work on the human genome has involved Europeans or North Americans of European descent, largely because that is where the research has been done. If, however, a researcher is trying to find a particular rare gene variant—say a variant that causes a disease—the researcher will look for it among people who have a high rate of the disease. Usually, that has meant family studies; in some situations, it may mean studies of discrete cultural groups, including indigenous peoples. For example, much work in looking for a genetic link to non-insulin-dependent diabetes has been done with the Pima Indians of Arizona—a group that suffers disproportionately from this disease.

Several thousand human genes, proteins, and cell lines have been patented. As far as I know, only three patent applications concerning “inventions” derived from indigenous peoples have been filed. All three patent applications were for cell lines (not genes); two of the three were withdrawn without being granted. The third application, for a cell line derived from blood from Papua New Guinea, was nearly dropped, but ultimately was granted only because researchers speaking for the donor population requested it.