Scientists search for new healthier genes

Scientists are trying to collect and preserve rare human cells types and genes from "endangered" indigenous group in a bid to conquer genetically-linked illnesses. Johanna Son of Inter Press Service reports.

MANILA: Scientists have broken nature's barrier by manipulating genes that now make it possible to grow tomatoes that don't go bad or breed 'super cows' that produce more milk.

Now they hope to use the same knowhow in the search for ways to detect, prevent or cure genetically-caused diseases, by studying and looking for clues from the whole genetic systems of various peoples around the world.

To do so, scientists need to record the diverse genetic makeup of "endangered" indigenous groups, who they say have more informative gene makeups than urbanites and may carry genes immune to modern-day illnesses. But experts worry these groups may die out and bring their genetic secrets with them.

Thus, international scientists of the Human Genome Organization (HUGO) have been trying to collect and preserve rare human cell; types and genes from more than 700 indigenous groups under the U.S.-based Human Genome Diversity Project.

Targeted groups in the megaproject, estimated to cost up to US$3 billion, include Indians in Central and South America, Aetas of the Philippines, Penans of Malaysia and the peoples of the Sahara and Africa.

Project backers call the venture a big step for science and human health. But others say it leads to an ethical minefield, where a surfeit of pure science has little respect for indigenous culture.

"Our land, our culture, our subsoil, our ideology and traditions have all been exploited. This could be another form of exploitation. Only this time they are using us raw materials," said Leonora Zalabata of northern Columbia's Archuaco people.

"We don't want to be guinea pigs for their experiments," added Zalabata, who was interviewed for a documentary on the HUGO project called The Gene Hunters. The film. shown on British television in February, was produced independently by Luke Holland and Zef Productions.

The dilemmas in the human genome project, which aims to analyze and sequence in DNA in their chromosomes, are complicated by the fact that scientists who take blood, tissue or hair root samples from indigenous folk do not always explain the purpose behind these collections.

"We don't tell every community that we are immortalizing their cells," said Dr. Alberto Lopez, a geneticist with the Columbia- based Genetics Institute who has drawn blood from Asario Indians with the help from the drug firm Hoffman-La Roche.

The documentary adds that Indians are often persuaded to give blood because they are given medical treatment.

"We're taking from them their DNA, which we now consider like gold. It's even worse than standard colonialism and exploitation, because we are taking the one thing that we value," George Annas, professor of medical ethnics at the Massachusetts Institute of Technology, argues in the film.

Nicanor Perlas of the Manila-based Center for Alternative Development Initiatives says at least one group of gene hunters tried, but failed, to get tissue samples from the Aetas who live around Mt. Pinatubo volcano in northern Philippines.

The U.S.- based Roche Molecular Systems asked a Filipino group to help arrange a medical team's visit two years ago, but the group balked at the idea. Filipino indigenous groups have been trying to stop the human genome projects for years.

"This is just a more sophisticated version of how the remains of our ancestors are collected and stored in museums and scientific institutions," says Victoria Tauli-Corpuz of the Cordillera People's Alliance and the Asia Indigenous Women's Network.

Some experts argue that even if scientists tried to get communities' informed consent, it still wouldn't work.

It is "virtually impossible" to get the informed consent of indigenous folk "because if they understand the project they would refuse, and if they don't understand they can't give consent", says Annas. "It's total exploitation. It is taking things which can be of no benefit to them."

Ray Apodaca of the National Congress of American Indian says: "We know where we came from and we know who we are, and we think we know where we are going. Why do we need to know anything else? Is this for their benefit? It certainly isn't for ours."

Indigenous folk also fear that the initial efforts to collect and record human ethnic diversity would lead to the patenting of genetic material, their alteration and sale, because of the high cost of the human genome project.

The U.S. National Institutes of Health and the energy department spend $180 million a year on the project, which is also backed by charities and scientists in the United States and Europe.

Already some research groups like the U.S.-based Human Genome Sciences are reaping profits by tagging human genes, seeking patents for the sequences they discover as well as their databases. Drug firms, which may one day develop cures using studies of the human genome, are paying to access such data.

"How soon will it be before they apply for intellectual property rights to these genes and sell them for profit?" Tauli- Corpuz asked, noting that many indigenous folk have already lost native seed varieties to patents by research institutions and companies in the North.

Critics of biotechnology say transferring genes across unrelated species to make products like the Flavrsavr tomato, the first biotech food item to hit the market, is bad enough.

But the newer, more complex uses of biotechnology are more worrisome since they reflect "a limited world view embedded in a science that views life simply as a biochemical machine to be manipulated, bought and sold for profit", the Manila-based Anti- Biotech Coalition said last year.

Other scientists say biotechnology is a tool that can be used for good or ill, adding that the genome program's aim is to provide medical services by breaking through the limits posed by genes people are born with.

But indigenous groups, many frustrated by marginalization by 'development', are wary about the altruism of the project, though some have suggested a middle ground by entitling them to part of profits from the gene collection scheme.

Tauli-Corpuz says the project involves not just collecting indigenous people's genes but their "lives and beings" as well, because people are made up of much more than genes.

In The Gene Hunters, Zalabata said: "Science and technology solve problems, but they are also aggressive. Our technology is in the head, the heart and the spirit. That is different."

-- IPS