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In spite of these problems, the burgeoning genetic revolution is already causing seismic reverberations in the business world. Pharmaceutical companies have staked hundreds of millions of dollars on efforts to discover genes connected to disease, because they could show the way to molecules that might then be good targets for drugs or diagnostic reagents.
The prospect of commercial exploitation of the genome is motivating protests in some quarters. Most of the political flack is being taken by an initiative known as the Human Genome Diversity Project. The diversity projectwhich is not formally linked to the genome projectaims to study the variations in genetic sequences among different peoples of the world.
Supporters of the diversity project, which was conceived by Luigi Luca
Cavall-Sforza of
Henry T. Greely, a Stanford law professor who is a co-organizer of the genome diversity project, recognizes that data about genetic variation could invite racists to concoct arbitrary rationales justifying discrimination. But he says the project will accept its responsibility to fight such abuses, and he notes that the available data point to how superficial the racial differences are: most of the 0.1 percent of variation in Homo sapienss occurs among members of the same race, rather than among races.
Still, the project is struggling politically. One of the thorns in its side
is the Rural Advancement Foundation International (RAFI), a small campaigning
organization based in
Greely insists that the project’s protocols eliminate the possibility that samples will be used for profit without the consent of donors. Notwithstanding that assurance, a committee of the United Nations Educational, Scientific and Cultural Organization (UNESCO) has criticized the project’s lack of contact with indigenous groups during its planning phase. Concerns about exploitation have also been fueled by a controversy over a patent granted to the NIH on a cell line derived from a Papua, New Guinean man. Such worries may explain why the genome diversity project has so far failed to obtain large-scale funding.
How the genome patent race will play out is still unclear. Collins says that
a scramble to patent every sequenced gene would be destabilizing, as it would
imperil cooperation among investigators. Traditionally, scholars have been free
to carry out research unhampered by patents. That freedom cannot be taken for
granted, states Rebecca Eisenberg, a patent expert at the
Before a gene can be patented, the inventor has to know something about its function, in order to meet the legal requirement of utility. Industry, however, controls most of the research muscle that can efficiently discover useful properties. So commercialization seems to be an inevitable consequence of the genome’s scientific exploration, as it is for other explorations. Although the U.S. Patent Office held hearings to examine questions raised by gene patenting, turning back the clock to disallow such patents, as some critics urge, seems unlikely. And so long as corporate dollars do not stiffle collaboration, people in rich countries will probably benefit from the feeding frenzy.
How much the rest of the world will gain, though, is a valid question. Some
gene therapies now being evaluated would be tailored to individual patients.
But James V. Neel, a pioneer in Homo sapiens genetics at the
Still, the gene race is on. Better medicines will be found; some people will make fortunes, and some will probably suffer harm. But it is a safe bet that although all Homo sapienss share DNA, not all of them will share in its bounty. The World Health Organization reports that 12.2 million children under the age of five died in the developing world in 1993. More than 95 percent of those deaths could have been avoided, according to the agency, if those children had access to nutrition and medical care that are already standard practice in countries that can afford them. For many of the world’s unfortunates, genetic medicine may always be a distant dream.
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