Leon explains the genome, and the projects to map the human genome:
There are actually two projects that are occuring right now around the human genome. To start off with, a person's genome is that person's own complete set of genetic instructions. In other words, if we were to analyze someone's DNA and lay it out, that would be considered the genome. All of the individual's information to the cellular structures and the operational directions to those cells are contained in the DNA. So the Human Genome Project (HGP), which is the larger project, is working over a 15-year period to sequence the entire human genetic code.
The Human Genome Diversity Project (HGDP) is an offshoot of that. And that project specifically looks at the collection and sampling of indigenous people. What that project will do is - first of all, it's collecting money. No collections of genetic material have started yet under the HGDP. They need to raise 25 million dollars to operate over a five-year period - that's when they will be collecting all these samples. For five years they will travel the world, and essentially hunt down these genes.
What they're looking for are unique genetic variations of these so-called endangered human populations. Biologically speaking, individuals are very similar. It's really hard to tell from a cell line if that person is Chinese, or Irish, or Native American. But there are genetic variations within the code. One little subtle chemical compound could be in there that changes the complete makeup of the person just by that little difference. So that's what they're looking for.
Researchers claim they want to study those differences so they can attain anthropological enlightenment and figure out the true origins of certain human populations - study the migration patterns of tribes that have migrated, that acknowledge they've migrated to wherever they've ended up. It will also show how closely related we are. They are looking for pristine human stock to study, because right now the world is a melting pot, and it is hard to find any human population that hasn't intermingled with another. But there are some.
And apparently they've found 733 of these so-called endangered human species - most of which are in the "Third World." And surprisingly, 10% of the populations that they've listed are here in the United States - the Pima are listed, the Ojibway from Canada and the U.S., the Lakotas and Pomo. They've listed a lot of the Native populations here in the United States even though I don't believe they think there are pristine human blood lines here.
Both of these projects were the result of the environmental summit in Rio in the late 80's. When the discussion of preserving the biological diversity of the planet came up, participants wanted to come up with a biological diversity convention protecting habitats that are home to diverse life species that we don't know about. Only the United States argued against it. So the U.S. came up with the idea that we can genetically preserve these endangered species. Then they took it a step further and said, you know, we can actually preserve the cell lines of the human species. As a result, the Human Genome organization was created to put together the project. That's where these projects came from. And their goal is to create the world's largest genetic data Base,
The Department of Energy actually has a Human Genome Webpage, where any researcher can jump on line, pull up the DOE, go to the Biological Division, and pull out the HGP. A credentialled researcher can order genetic samples of any human population - Federal Express. That's what they hope to accomplish; to create a genetic library where all researchers can access the material and share the data.
Leon talks about the patenting of human tissue:
The HGP and the HGDP are both privately-funded projects - the projects do not intend to file patents on any of this material - that's what they're saying. But the United States government has applied for patents on the cell lines of three different native individuals - one from the Solomon Islands, one from Papua, New Guinea, and one from a Guayme Indian from Panama. That wasn't part of the HGDP - again no collections have taken place yet - that was done by the government outside of any project.
They were trying to identify certain disease chains among human populations - the three populations mentioned above all involved a unique leukemia virus. There is a high incidence of the virus in the blood lines of these people, but they weren't dying from leukemia. So they wanted to get that genetic marker to explore. But in order to pursue that and fund the research, they filed patents on it. The governments of all three places organized international protests around that. You didn't hear about that here in the U.S. But around the world, international protests were organized against those patents in both the U.S. and Britain - the only places where patents are granted on genetic material. Protesters screamed that this is the body of "Third World" people, and the United States can't claim ownership over that.
The U.S. did drop one of the patent applications which, they said, didn't turn out to be valuable. But the other patents are still pending, and the U.S. has declared its right to them under "free trade" agreements.
The organizers of the HGDP are walking carefully and emphasizing that they aren't patenting anything. There is no intent to do this. But they also admit that once the research is made available to pharmaceutical corporations or independent researchers, they will have no control over other agencies filing patents on the material.
Protecting indigenous people:
Dr. Henry Greeley, who is a law professor at Stanford, is the Chair of the North American Ethics Subcommittee of the HGDP. That committee is responsible for drafting an informed consent process. So when these people come in to the reservations or villages, they will have to explain to people why they want their bodily fluids and tissues. They'll have to explain that it will be made available for medical and anthropological research by corporations. And if the people participating in it don't want commercial exploitation of the material, they can make that provision at the time of the informed consent. This is where we are in the process right now - that the HGDP is finalizing its informed consent procedure.
But native people are very concerned that history - very recent history - dictates that with any kind of agreement offering protection to native people, in the "Third World," the common practice is to just go in and wipe 'em out, take their land. They don't see it any differently with genetic material. They've suffered great loss of life and land at the hands of Western market forces. And now, if western market forces want their genetic material, indigenous people feel that they'll just get it. Laws and treaties will not stand up against what the corporations want - they will just get it.
What indigenous people are working on at this point - not that they're against sharing if they have a cell line that can help cure disease - but at this point they're organizing to resist - find a way to articulate a very clear, "No, we don't want you to take our precious bodily fluids." So that's where it's at.
We don't know if that attitude will change, but what scares people from participating in the project is the fact that it will be made available to global powers. And genomic industry is the new industry. There are a lot of different companies working on every level of genetic manipulation - from microorganisms to grow pest resistant plants to actual transgenetics with human growth hormones injected into animals. Bizarre things.
The Department of Energy was involved at the beginning. People may not know that DOE has one of the largest biological divisions on the planet. It was created at the onset of the nuclear age. They knew then that exposure to radiation genetically mutated people. And they wanted to monitor it, understand it, and modify humans or workers to handle higher levels of radiation exposure.
Leon describes the radio project he's working on:
We've been working on this radio project for the last year - funded by the Tides Foundation. The goal is to have a piece that touches on all the issues and gets out to native communities. There needs to be an understanding, so that when people in the white coats come to the communities, native people will not have to rely solely on the informed consent process - on the literature that the HGDP brings.
So we've traveled to Mexico, Alaska, New Zealand, different places in the world where bio-prospecting has occurred. We interviewed people, got their stories and their concerns about this. We're going to distribute this through the radio satellite, through American Indian Radio and Satellite Network (AIROS). And we'll be doing off-air distribution, making cassettes available to tribal communities. We hope to create a multimedia project as well - add the audio components to film - and distribute to native educators all over the Americas.
Leon discusses genetic theory in native cultures:
It's important to understand that genetics is not new to native people, especially cultures in the South Pacific rim, where a lot of this testing is taking place outside of view of regulators in the U.S. The Maori people, for instance, acknowledge migrations in their stories. They say they migrated from Greater Polynesia and came down through the Marquesas, the Carolines, the Cook Islands, the Society Islands, and south to New Zealand. And they know they migrated there. How they know, and why their traditions are so strong, is that they have a society called the Fakupapa - which preserves the genealogy.
When the Maori, for just one example, put people on boats to go out into the World, they picked the people to go based on certain qualities they knew would be needed in the transplanted society. Pilots, rowers, wise people, dancers were necessary to build a strong community wherever they landed. Now that they're extracting genetic material, the Maoris are a perfect example. In Toronga, a British genetic company, Cell Born Ltd., was after a protein effective in treatment against emphysema. They approached one of the Maori people, who said, "Sure." New Zealand is a leader in transgenics because of the sheep industry. The company took the DNA for research on emphysema, which they did. But they did not tell the people that the genetic material from the Maori individual would be implanted into a sheep. Once the Maori found out about it, and the Fakupapa heard about it - the questions were now, do we include sheep into our family line? This genealogy has remained intact for thousands of years. And now we come to this juncture in 1990 - what does that do to the spiritual beliefs and practices - they've always kept a tab of how the Maori have evolved, keeping sure they are on track with that sacred time.
It brings up all kinds of ethical questions. It sounds like science fiction and it is. All of it's theory. There hasn't yet, to this day, been any kind of genetic therapy that has led to any cure, for any viral disease or genetic disorder. None. And one of the big reasons that they're having so many problems is because they don't know how to efficiently insert corrected genetic material in a defective cell.
Briefly, the genetic "cures" the pharmaceuticals are looking for have a eugenic overtone to it. For example, if two obese people wanted to have a child, they can surgically manipulate an embryo and screen all these embryos and identify an obesity gene, remove it and insert a normal gene. Micro-injecting the material into the embryo is hit and miss. Working on living people, the identified defective gene is surgically removed. Then the corrected gene has to be "cooked" with a modified virus, the virus is injected into the body, and the theory is that the virus will immediately attack every cell, with the hope that the new corrected genetic material enters the cells at the same time.
The problem is, and geneticists all admit this, that the viruses they have to work with - shuttle or vector viruses - are the most dangerous, most aggressive viruses known. They have to be in order for it to immediately attack the trillions of cells in the body. So that's an issue of bio-safety, which to native people is probably the ultimate threat to life as we know it. If this virus, or any living transgenic species, get released into the environment accidently, there's no way to recall it. It reproduces. It mates with other living organisms. It incorporates itself into the natural gene pool of life. And once it's out there. . . As an example, during the Mississippi floods in 1993, there were two research fields full of genetically engineered corn, that washed away. They don't know what happened to it, they don't know where it went, they don't know what it's going to do. And they didn't know then what this hybridized strain was going to do anyway, they were just research fields.
It could be nothing to worry about, but the point is, accidents happen like that. Who knows where that corn is - maybe it's growing. There are always unintended bizarre consequences to a lot of new technology. Western society, at least, always will make that mistake. Just like nuclear power. They said, "It's safe. It's safe. It's safe." Then The environmentalists were saying, "We told you, we told you."
It's the same with this situation, except that you are working with living things. And it can get away from you. Like in Jurassic Park, when "Jeff" was telling them, "Life always finds a way." And it's true. It always finds a way.
Copyright Mendocino Environmental Center 1996
Permission granted to excerpt or use this article if source is cited