In this final interview, we will explore the misuse of DNA studies, and opportunities for public input. This is the second part of our interview with Judy Gobert, an enrolled member of the Blackfeet Nation of northwestern Montana, with family in the Sioux Nation and the Salish people of the Flathead Reservation. She is the Dean of Sciences at Salish-Kootenay Tribal College on the Flathead Reservation, the spokesperson for the Salish-Kootenay Tribes on genetic issues, the science advisor for the Montana-Wyoming area Indian Health Board and an advisor to the Montana-Wyoming tribal leaders. She is also Chairperson of the Board of the American Indian Science & Engineering Society (AISES), and the Chairperson of the Board of the Indigenous Peoples Council Against Biocolonialism.

Judy: It looks like the researchers in this one case in Florida went against their own protocols in allowing treatment of a young man with serious physical problems who was not a suitable candidate into the study. Which raises the question of who's policing and regulating all of this? Who's watching out for the public interest--not just Native people but people in general? People involved in the FDA are involved in the biotech industry by their very careers. There are very few people who are qualified to review this, and those who are, are scientists themselves. And once they leave the FDA, they go back into the biotech industry, be it into medical research or back into corporations. There is no public oversight of this, and the public has not been kept well-informed.

Judy: They need to write their Congress people. The legislators are in love with this technology right at this particular moment in time. They need to start raising the questions--calling their Congress people, calling the President and writing letters. Whenever there's been public outcry, there's action, but if nobody says anything, the government will proceed on the basis that no outcry means that everybody's agreeing to it. We also have a problem with the media.. We have a journalistic and media campaign that's very well funded by the biotech corporations in this country, and the media is in love with science, too, and there's a whole intense movement to move science into the role of God--the Creator. And now we're in the Creator's sandbox--the creation--and messing with creation. And that part is scary to me.

Judy: Yes, and it's part of the long-standing concept of ownership of the land—the Western worldview of owning the land and being able to somehow tame it. Many of the things they've done in the west have tried to manipulate and control environments, harness the earth and exploit whatever was there and then just leave it once whatever was useful was extracted and used up. There are huge problems with many of the super fund sites where there was mining and logging, and we have to live with all the practices of the past. Now there are huge efforts to reclaim and restore those kinds of things, and they're finding it virtually impossible to do because of the concept of being able to take what you want without giving back, and that what is left is just trash. That whole concept and way of interacting with the land and the animals and the plants, now it's extended to each other. That part of it is really disturbing to us as a community, to see the same kind of thought process going on with life itself.

Judy: Actually there are several things we're going by. One, the U.S. government has a federal trust responsibility since all the Native Nations are domestic dependent nations with a specific legal relationship with this government that binds it to do consultation on a government-to-government basis with each tribe. So we're different from other groups. We are not minorities. So there's no question about whether it should be done--it has to be done--it's the law of this country. There's a memorandum that came out of Clinton's office in 1994 that tells heads of executive departments and agencies specifically what they need to do to establish that government-to-government relationship. And then there's an executive order that came out in 1998 that says that you must consult and coordinate with Indian tribal governments. Those are not suggestions, those are mandates. So we aren't just another "group" to be dealt with. Which means that these federal agencies that are doing the research have to consult with the tribes first. They can't go to individuals without first going to the tribal government.

Judy: No. Lauren Foster, for example, worked with a group in Oklahoma, and he hammered out an agreement with this tribe to grant them anonymity within the studies. He agreed that their name would never be published and that their tribal identity would be protected within anything that he did. He violated the agreement 6 months later. The attorneys at his university said that this study was funded with public dollars, so he couldn't have that kind of agreement. So he published the tribal names. So we're skeptical about anything put in writing--treaties, contracts…

However, science can't be trusted in any sense. When you look at how John Moore, who was a white business man from Seattle, was treated, considering the law requiring informed consent in research studies--the law didn't even protect him. His cell line has probably made that company several billion dollars and is now a standard research tool. Everyone has to buy it from one company. John Moore took this case to the California Supreme Court and it ruled against him, saying that once tissue leaves your body it is not yours anymore. The problem with all contract law is who is going to be enforcing it? What governs this body of law? How can there be protection for tribal rights or for anyone's rights?

Judy: Yet NAGPRA is under attack right now. Genetic technology and tools were not as powerful when it was enacted, but now scientists are chomping at the bit to get at our ancestors and do DNA analysis, and especially at our older ancestors. They see that at a way to rip the guts out of NAGPRA. But here is where we run into the limitations of the science, and this is what the scientists aren't telling you: you cannot use DNA to identify groups of people. To try to do it for NAGPRA purposes would require a mass DNA sampling of living tribal members as people to compare against. Neighboring tribes would be very unlikely to be genetically distinct from one another because they intermarried. The idea that if we come from the same group we have one homogeneous DNA is totally incorrect. If you try to relate an individual to a group regarding DNA, all groups are heterogeneous, so even if a sample looks like an average member of a group, it doesn't mean they were part of that group. And even if the sample doesn't resemble the average member of a group, it doesn't mean that they were not part of that group. He or she may have been an adopted visitor. Therefore, relying on DNA to pinpoint people as belonging to a group is very, very dangerous--the technology can't do that. And now tribes themselves are questioning whether they can use DNA to find out who is part of their tribe, but it can't do that. But no one is telling them that. People are propagating a theory that they're hoping will be true years down the road. In order to be able to do that, they would have to sequence the whole genome of every single tribal member, identify the variations in all of the members, and that's impossible. Look how long it's taken to sequence just one human genome.

Judy: That's right. The whole idea of pinning us down to our gene lines is so bogus. Our tribal identities are based on spiritual ways, our language and our cultures. It's not based on DNA. We have people within our tribe who were adopted. We have a long history of going outside of our tribe--we knew better than to intermarry. That's why we have elaborate kinship systems--we can't marry our cousins down to the nth degree. And we had elaborate trade agreements. The Blackfeet and the Blood from Canada used to go all the way into Mexico to trade goods, but also the trade routes would be cemented with marriages, and women would come back with the men. So to somehow say because we're fullblood members of our tribes that somehow that blood is pure is totally bogus. We've gone long distances to bring new blood into our territory because we were the first geneticists on this continent. We saw what happened when there was close mingling among relatives be they animals or people. We knew that it was harmful to our communities. So to claim that there is one pure Blackfeet blood or any other is based on a fallacy that science is propagating.

Judy: Yes, I think they are. One thing that we've observed in this country is that when the public raises an outcry against what they consider damaging to them, the legislative system kicks into gear and mobilizes behind the public. It's always happened in this country. People are now realizing the dangers of genetically engineered crops and the danger of globalization, which is what the World Trade Organization promotes, and the impacts these things are beginning to have on their everyday lives. We're on the front lines of the quest for human DNA and human variation, so we're the targets right now. But once people begin to realize the dangers to them of all of this genetic research, they'll speak out. But don't get me wrong, not all of it is bad. There is going to be some useful information, and there are going to be some problems that we're going to be able to address, but at what cost to humanity?

Judy: There are specific diseases that I think we will be able to address, but these are very few and very limited. For instance, the Bovine growth hormone was blown all out of proportion. They were selling it to people who had short kids, though it was developed to correct the condition of people who had dwarfism. There are very few dwarfs in North America, but there are some people who are just short. It has been proven, however, that in this country there's discrimination against men who are short, so a lot of parents were giving their sons this growth hormone, though they just happened to be on the short end of normal. They weren't sick and they didn't have a disease. So what are we doing to ourselves? What kinds of values have we placed on the physical manifestations of human beings? There's this 'ideal person,' this 'Barbie and Ken doll' mentality that we've propagated that's impossible for everyone to live up to. Instead of celebrating the diversity of who we are as people--be we short, tall, skinny, fat, etc.--we're trying to change each other to be this perfect human being. Intelligence is another issue. There's this whole thing about genetically engineering the perfect human being, and whose definition of 'perfect' is going to be used? From what I've been told from our people's perspective, every human life is perfect, every life form is perfect because the Creator made it. But when we start changing the very essence of who we are as human beings, and using man-made technology to create life, what have we done to that perfection? Man is coming in and inserting his idea of what perfection is based on just physical attributes and not spiritual attributes, and so we change life in a very fundamental way from perfection to man-made perfection.

I would like to reiterate that all this research on Native people, and the government having to sit down with each Nation and hammer out a policy--that's not an option, it's mandated by their own Executive. For any agency to try to get out of consultation by developing broad, sweeping policies that include everybody--they can't do that. They have to deal with each tribe on a government to government basis.