from Priscilla Settee - Canadian Women's Health Network

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The Human DNA of identified Indigenousgroups is the focus of curiosity and activityamong an international consortium ofscientists, universities, governments, andother interests in North America andEurope. 1Over 700 Indigenous groups world-widehave been identified to have samplescollected from them. Indigenouscommunities targeted for DNA collectioninclude Africa (165), Asia (212), SouthAmerica (114), Oceania (101) NorthAmerica (107 tribes) and Europe (23).Established in 1992, the Human GenomeDiversity Project (HGDP) will take blood,tissue samples (cheek scrapings orsaliva), and hair roots from hundreds ofIndigenous communities throughout theworld. Through the Human GenomeOrganization (HUGO) the project ismandated to map the entire geneticstructure of the human raceHUGO seeks to sequence the DNAinformation in all 100,000 genes in thehuman body and is expected to cost 3billion dollars over the span of the fifteenyear project; HUGO is now nearingcompletion significantly ahead ofschedule; a ‘rough draft’ has already beencompleted. While HUGO intends touncover the norm of the human genomeas a composite model, the HumanGenome Diversity Project seeks to mapand sequence genetic diversity. Theproject is specifically mandated to takeblood, tissue, and hair samples from1 This article draws on the following sourcematerial: Indigenous Women Address theWorld. Indigenous Woman Magazine. SpecialBeijing Edition, Rapid City, South Dakota,U.S.A. 1996; Indigenous Woman Magazine,Rapid City, South Dakota, U.S.A., Vol, 2, No.3, 1996; Dukepoo, F., & Harry, D. IndigenousPeoples Coalition on Biopiracy, 1998; “Voice ofNative Grassroots for Environmental Justice.”Indigenous Environmental Network News.Vol.3 No. 2, 1997; Western Shoshone DefenseProject Newsletter, 1997."endangered" indigenous communitiesaround the world.The HGD project was formally adopted in1994 by the Human GenomeOrganization. It has sought massivefunding. This multi-billion dollar initiative byscientists has plans to sequence the DNAin the entire human genetic structure. TheHGDP seeks to map the genetic differenceof groups from the monotype genome thatwill be identified by the HUGO effort.Scientists believe that many of the world'sIndigenous people are in danger ofbecoming extinct and refer to them as‘isolates of historic interest’. Scientistshope to gather DNA samples from theliving before they disappear forever, andso avoid the irreversible loss of preciousgenetic information. Indigenous peoplesfind it reprehensible that scientists' interestis purely to document scientific geneticinformation rather than to preserve tribalgroups. In effect, the scientists are askingendangered tribal groups to submitpersonal samples before their groupdisappears. The scientists' actions reviveout-dated and oppressive attitudes, andtheir actions instil self-fulfilling pessimism.Such actions are simply unethical.Blood samples taken from Indigenouspeoples will become immortalized forfuture study. A technique called "cellconservation" will keep certain cells of anorganism alive and capable of multiplying.Unlimited amounts of the organism's DNAwill be stored at various gene banks,mostly in the United States.Indigenous peoples have many concernswith the HGDP. One is the issue ofinformed consent. Although the HDGPclaims that it will seek the consent of theindividuals and populations concerned,many people doubt whether this will, infact, happen. Some questions that remainunanswered are:2
• Can tribal leaders give consent for thewhole tribe?• Can one person give consent whileothers don't?• How can some of these concepts beexplained in ways and languages forpeople who have no concept or words forthese confusing terms?• What are the benefits for the localcommunities?• Will decisions to refuse consent be fullyrespected?The HGDP North American Committeesecured a grant to develop a modelprotocol or rules for the collection ofsamples from Indigenous groups. It is feltby Indigenous people that this protocol willprimarily be used to seek project cooperation.The HGDP states that the research willhelp reconstruct the history of the world'spopulations, address questions about thehistory of human evolution and migrationpatterns, and identify the origins of existingpopulations. While the HGDP is looking foranswers about human evolution,Indigenous peoples already possessstrong beliefs and knowledge regardingtheir creation and histories.Danny Billie, traditional spokesman for theIndependent Seminole Nation of Florida,stated in 1997“The white people are trying to playGod. If they continue to do what theyare doing the impact to the humanspecies, insects, plant and animal life isgoing to be devastating. They think thatthey can get away with it, but they'llalso suffer the consequences.”In response to the HGDP researchIndigenous peoples from various parts ofthe world have mobilized against theproject. Documents such as the UkupseniDeclaration from Panama and the NationalCongress of American Indians ResolutionNo. 93-118 have been signed. Thesedocuments represent hundreds ofcommunities who declare their oppositionto the HGDP.Karioca Declaration. In the early 1980's,the Karioca Declaration was signed by agroup of Indigenous people who wereopposed to the HGDP and who met priorto the 1993 United Nations Conference atthe Earth Summit in Rio de Janeiro.Mataatua Declaration. The KariocaDeclaration was followed ten years laterby the Mataatua Declaration and signedby over 150 participants from 14 UnitedNations countries. The Declaration callsfor an immediate halt to the ongoingHGDP until all aspects of it could beunderstood by Indigenous peoples.Article 29. In 1994 The United Nations'working group on Indigenous populations,along with the Sub-Commission on thePrevention of Discrimination andProtection of Minorities approved Article29 of the Declaration of the Rights ofIndigenous Peoples which stated:“Indigenous Peoples are entitled to therecognition of the full ownership, controland protection of their cultural andintellectual property. They have therights to special measures to control,develop and protect their sciences,technologies and culturalmanifestations including human andother genetic resources, seeds,medicines, knowledge of the propertiesof fauna and flora, oral traditions,literatures, designs, and visual andperforming arts.”New Zealand. In 1993 an assembly ofrepresentatives of the tribes from theNorth and South Islands of Aotearoa (NewZealand) passed resolutions condemningthe HGDP and the patenting of life-forms.National Congress of American Indians. Inthat same year the National Congress of3
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