When in the early 1990's the U.S. government-funded Human Genome Diversity Project (HGDP) drafted plans for a large genetic database of distinct ethnic populations, it was met with a great deal of controversy and criticism. Led by scientists such as Luca Cavalli-Sforza and Allan Wilson - both pioneers in the field of population genetics - the HGDP's original aim was to collect DNA from individuals of genetically isolated populations around the world in order to reconstruct the evolutionary path of humankind. But the initial planning sessions, which were funded by the U.S. National Science Foundation, the National Human Genome Research Center, the National Institute for General Medical Sciences, and the DoE, quickly became mired in disagreements over which populations to choose for sampling and the best way to define what population means in this context, a context that is as much cultural and anthropological as it is scientific. In addition, groups such as the Rural Advancement Foundation International (RAFI) and Third World Network voiced their concern over the possible implications of such research for those largely indigenous communities who would have their genetic material housed in cell lines in the U.S. institutes. Although HGDP committee members denied that there is any economic motive behind their proposal, critics expressed concern over the way in which indigenous communities were effectively cut out of the planning process.
The controversy was further fueled in 1993 by related but independent incidents. U.S. scientists, with NIH funding, had applied for patents on the genetic material of a Guyami woman from Panama, only with the woman's "verbal consent." A similar case was found with a cell line derived from a Hagahai man from New Guinea. Such instances seemed to RAFI and other groups as an explicit example of colonialism, but now practiced on human genetic material instead of on territories or on natural resources. Native American groups in the United States accused the HGDP of practicing biocolonialism, a term that has been used frequently in describing the practice of sampling genetic material for potential genes of value (be it medical or economic value). The governments of Panama and the Solomon Islands separately protested to the international community over the patents (one of which was subsequently dropped), and indigenous communities, nongovernmental organizations, and South Pacific governments lobbied for a "lifeforms patent protection treaty."
At the same time, in the midst of mounting tensions over the HGDP, the World Council of Indigenous Peoples publicly criticized the HGDP, dubbing it the "Vampire Project." Such concern and dissent forced the HGDP committee to draft up a set of "model ethical protocols" (MEPs), and in 1993 the HGDP formed the North American Regional Committee, whose aim was to come up with acceptable criteria for the collection of genetic material from human populations. Written in consultation with leaders from indigenous communities in the United States (because Native American tribes were one major target of the HGDP), the MEP's stressed "informed consent" and the importance of cultural as well as scientific understanding. Since the time, however, the HGDP has been conspicuously silent, and despite the flurry of news items and press releases relating to the various genome mapping endeavors around the world - both government and corporate sponsored - there has been relatively no news or updates on the HGDP's progress.
...bioinformatics involves the use of computer and networking technologies in the organization of updated, networked, and interactive genomic databases being used by research institutions, the biotech industry, medical genetics, and the pharmaceutical industry. Bioinformatics politically signals an important development in the increasing computerization of "wet" biotech research, creating an abstract level where new information technologies can establish the foundation for a new research paradigm of "in silico biology."
...these two trends - the decrease in HGDP's visibility, and the rise of bioinformatics - are inextricably connected. In fact, this twofold trend is striking: on the other, a string of "population genomics" projects, the most visible being the IHSD managed by deCODE Genetics, and the government sponsored U.K. BioBank. Such projects draw our attention to the ways in which race, genomes, and economics are mediated in a complex ways by information technologies. Genomics - the technologically assisted study of the total DNA, or genome, of organisms - currently commands a significant part of the biotech industry's attention. In economic as well as scientific terms, genomics has for some years promised to become the foundation on which a future medical genetics and pharmacogenomics will be based. This chapter attempts to draw out some of the linkages between the biotech industry and the emphasis within genomics programs on diversification and the collection of particular populations genomes into computer databases. Such research programs, which highlight "genetic difference," demonstrate the extent to which culture and biology are often at odds with each other and the extent to which both ethnicity and race are compelled to accommodate the structures of informatics and information.
The Global Genome: Biotechnology, Politics, and Culture
Eugene Thacker
MIT Press 2006
ISBN-10: 0-262-20155-0
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