Debra: We are looking at a number of different concerns in this field: one, the violation of human rights and collective rights in research and the collection of DNA; two, the commercialization of human DNA; and three, genetic manipulations of human DNA. This research also brings us closer to the possibility of sophisticated attempts at bio-warfare based on unique genetic data from ethnic groups.

Debra: Genetic research, with an interest in the DNA of Indigenous peoples, has proliferated way beyond the Human Genome Diversity Project (HGDP). We first learned about the HGDP back in 1993, but now it seems that human genetic diversity research is on everybody's agenda. There's a huge amount of public money going to a number of federal research projects for some aspect of genetic diversity research, mainly through the National Institutes of Health (NIH). Several institutes at the NIH are involved in genetic variation research that impacts Indigenous peoples. These include: the National Institute of Environmental Health's Environmental Genome Project, the General Medical Sciences Pharmacogenetic Research Project, the National Human Genome Research Institute's SNP's (single nucleotide polymorphisms, or single base-pair differences in DNA) Project, the National Institute of Alcohol Abuse and Alcoholism, and the National Institute of Arthritis and Musculoskeletal and Skin Diseases.

Debra: There are different purposes based on the interests of the researcher(s). For instance, the Environmental Genome Project is looking at how various ethnic groups react to environmental pollutants. The SNP's research project is looking for variation in genetic markers--very small segments of DNA--and how they differ by population. And the HGDP is using genetic research to understand the evolution and migration patterns of populations.

Debra: The outcomes of research are determined by the research design. In most cases of genetic research on tribes, tribes have not been involved or even consulted during the design process. Instead they are viewed as passive subjects for someone else's curiosity and benefit. What's essentially going on in the big picture is a race between the federal programs and private industry to be the first to sequence human genetic material, and then to identify unique genetic markers across populations. We are involved simply because genetic diversity exists among Indigenous populations. This raises all of the same questions and concerns that were raised by the HGDP. First, you have comparisons across race based on basic DNA structures. Then you have identification of unique markers across races. As distinct populations, initially we are going to see a huge emphasis on collecting DNA samples to research, and then attempts to patent and commercialize the unique information that's uncovered in this process. Secondary concerns relate to questions of fully informed consent--if the consent processes were adequate and secured from the appropriate governing authorities. We also need to monitor the enforcement of agreements, and whether there has been any secondary use of our DNA by other scientists. These fundamental questions have yet to be addressed by any kind of bioethical protocol that protects the rights of human subjects generally, and more specifically, that protects the rights of Indigenous people as collective groups in genetic research.

Debra: There's a range of activity going on. Within the U.S., tribes are exploring the establishment of tribal ordinances that regulate scientific activity within their borders. Robb Hunter, an attorney for the Salish-Kootenai Tribe, has developed a model ordinance. He reviewed other tribal ordinances that protect cultural resources and traditional knowledge, and developed one that deals specifically with scientific activity within tribal jurisdictions. It's something that we'll be actively promoting over the next couple of years. The model ordinance is available on our website.

On the international level, very little is in place that protects collective rights in genetic research. The Nuremberg Code basically protects the rights of individual subjects in human research. The UNESCO Declaration for the Protection of the Human Genome mentions the right of groups to give collective consent, which is the first international protocol to recognize the collective right of groups to make decisions about research that impacts the group. The World Health Organization (WHO) has a draft bioethical protocol in process now that also recognizes the collective rights of groups in these decisions. Nearly all of the research we've talked about is population-based research. One of the challenges ahead of us is to get recognition for tribal governments or collective groups to make decisions around genetic research.

Debra: The right to establish laws that regulate scientific research is completely in line with the exercise of tribal sovereignty. This is such a new field for all of us, and we're finding ourselves in a reactive mode. There is a requirement under executive order for federal agencies to develop consultation policies with tribes, which would include NIH. This has been conveniently ignored, so we have a number of projects underway with indigenous peoples around the world in which the people are not fully informed, and direct consultation with tribal leaders has not been a priority. The IPCB plans to work with tribal leadership to begin the process of developing a consultation policy for any type of project involving genetic research that impacts tribes. This would require that tribal governments must be directly consulted with before any kind of activity is undertaken. Hopefully, that will help get us ahead of the game.

Debra: There is very little regulation in place that protects people in the face of biotechnology. For instance, the Hagahai DNA samples [taken from Papua New Guinea] are now available to anyone who wants to use them through the American Type Culture Collection. Anyone can pay $218.00 and order them through the Internet for research, as the samples are now in the public domain. I would think that DNA from the Pima and Papago peoples, as well, has been widely circulated among anyone doing genetic research on diabetes or obesity. In terms of a legal framework to prevent secondary uses of DNA samples, it’s just not in place. Since there isn't any national framework that regulates this activity, tribes must establish their owns terms of agreement, and be in a position to monitor and enforce those agreements if they choose to participate in genetic research. That's why establishing some kind of local regulation, and national policy, is so important. You will still have the problem of monitoring enforcement of those agreements, especially in an age when DNA can be bought and sold on the Internet, and where colleagues routinely send each other samples of DNA for different reasons.

Debra: We're becoming fairly well known. As a result of our advocacy efforts, the consciousness about genetic research and the concerns Native people have about it is increasing throughout Indian country. This wasn't true two years ago, but today, I think you can go to any conference of Native people and talk about it, and the people have a good idea of what you're talking about. In order to halt the flow of blood from our communities, the community education work really needs to continue at an intensive pace, as well as work to educate tribal leaders. The IPCB is also available to offer technical assistance to communities that are approached with genetic research proposals, to help them evaluate these proposals. We're dealing with a very complex topic in a highly specialized field, and we've assembled a team of specialists who can help provide direct support to tribes. We are also documenting the genetic research that impacts tribes, and making this information widely available. This can help us develop intervention strategies to insure tribes are not exploited with vague or misleading information.

Debra: Between now and the year 2003 (which is based on the Human Genome Project timeline), we'll see a heavy emphasis on the collection of DNA samples, and then a lot of rapid sequencing going on from both the private and public sectors, because the federal government is in a race with the private sector. They will be sequencing the human genome, and a parallel effort will be to identify the markers across populations. The concern that we have as Indigenous people is that we'd better be prepared for collectors that come knocking at the door. During this same period and probably extending beyond 2003, as unique information is uncovered, we'll see a rush to patent it. As this happens, segments of the human genome will fall under private ownership. Thereafter, once DNA samples are in collections and data is uncovered about those samples, we'll see efforts focus on genetic manipulations and experimentation. What scientists do with DNA in their laboratories is generally unknown to the public until, and unless, a patent is filed or the work becomes newsworthy.

Debra: A lot is already going on today: genetic sequencing and genetic engineering is an everyday occurrence. Some of the newly-proposed techniques to alter genes, particularly proposed work on embryos, would potentially affect the human germ line, which means that it would affect the reproductive cells of the embryo and all subsequent offspring. The list of activities can go on such as human cloning, artificial chromosomes, and xenotransplantation (animal/human organ transplants), all of which hold potential dangers for human society. There's no way to truly predict what the impacts would be on society or the environment. Genetic engineering manipulates life forms, which go on to reproduce, evolve, mutate, and interact in their environment. The impacts of these changes are unpredictable and have the potential to be devastating.

Debra: The public needs to wake up and demand policy changes that protect the rights of people (all people) in this work, and make sure some safeguards are put in place. The genomics industry and some scientists are quite happy having a silent public-they're happy being their own gatekeepers. As the situation stands, the scientists themselves are the people sitting on the bioethics commissions, and they give the nod of approval to proposed projects. Civil society needs to demand a voice in research that affects our futures, and which, by and large, we are paying for through public funding.

(To be continued. Next issue: Misleading Hopes-DNA Testing and the Search For Cures.)

Debra Harry, Director

Indigenous Peoples Council on Biocolonialism

Tel: (775) 574-0248

Fax: (775) 574-0259

Cell: (775) 848-0073

Email text message to cell: mailto:

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Email: dharry@ipcb.org

Website: www.ipcb.org

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