1 12 3 https://www.abyayalanews.org/files/original/0cbf9c0e9e62055028489b82ced8e624.pdf 2f994b26b83ffa990d5154782a93a883 PDF Text Text PERSPECTIVES ON B IODIVERSITY AND INTELLECTUAL PROPERTY The Human Genome Diversity Project: Implications for Indigenous Peoples We reported on the Human Genome Diversity Project in Abya Yala 's Dec. 1994 issue. Indigenous opposition to the project has been growing since that time. and the project has yet to respond ade· quately to fundamental ethical problems such as those raised in this article. By Debra Harry he HUinan Genome Diversity Project (HGD Project) proposes to collect blood and 1issue so1m · pies from hundreds of different Indigenous groups worldwide for T gcnc1ic swdy. On the assumption 1hat these groups are headed for extinction, sc-ientists :ue rushing to gather DNA somples before they disoppe•r. Then, Issues of Concern HGO Project sciemists claim to be searching ror answers to questions about human evolution. However, Indigenous peoples already possess strong beliefs and knowledge regarding their creation and hiStories: funhemlore. this is not a ptiotity concern for Indigenous people. The HGD Projects assumptions that the they say. ;u least the human genetic diversity will be prcser:vcd in gene banks as "'immortalized cell lines." BUl why the tremendous interest in sa\ring the genes of Indigenous people •nd not the people themselves? Who rc311y populations will be "discovered" and sdemilkally •answered" is insuhing to groups who already ha\'Cstrong cuhural beliefs regording their origins. What will be the ilnpact or a scientific theory stands to benefit from this endeavor? of evolution and migration that is ami· What •rc the dangers and long-term implications of biotechnology and genetic engineering? These are ques· tions Indigenous people must ask them· selves tn order w protect their interests in lite face or such a mysterious and well-funded cffon. thetical to an ln<ligenous groups com· mon beliefs? Will these new theories be used to challenge aboriginal territorial cl•ims, or rights to l•nd? Debra Harry is a Paitde Indian from Ntmda, USA. Sl1e is n:scarchirtg ISS!(f.S rdatrd lo IPR •nd the HGD Proj<Cl. Vol.8 No. 4 origins and/or migrations of Indigenous Medical Benefits? The often repeated claim that med· ical applications will be developed to tre•t diseases sulfered by Indigenous peoples is a complete misrepresemation of the Project. •nd scn•es to coerce the participation of subj~ts based on the false hope for medical n>ir:~cles. The Project's mandate is simply to collect. database. and maintain genetic samples Md dma, not to develop medic•! appli· C.3tions. The HGD Project will make the genelic samples available to "the pub· lie ... However, it is not clear who will have access to the data and actual genetic samples. It appears that the HGD Project will maintain an open· access policy. This me<~ns th3t once genetic ma1erials are stored in gene banks. they will be available in perpe· tuity. with minimal control. to anyone requesting access. Scientists need only demonstr:\te the validity of thei r scien· tific research in order to gain access to the samples. Medical applications are in fact likely 10 result from the eventual research. manipulation. and commercialization or the genetic materials. But they will mosl likely come in the form of pharmaceuticals or expensive genetic therapy techniques. Possible benefits ";II go only to those who can 13 �PERSPECTIVES ON BIODIVERSITY AND INTELLECTUAl PROPERTY afford the high costs of such treat · ments. The proposition that medical bene· fits will result from genetic &'tmpling is further suspect since no aspect of the project will take imo account the role that existing and historical socio-eco· nomic or environmental conditions play in the health of lndigcnoll5 com· munitics. lf an Indigenous popuhuion were interested in researching a genetic ques· tion spec,ific to their group. they would not need the HGD Project to do so. Genetic research te<:hnology and cxper· Since 1980: .. there has been a disturbing trend in US patent law that extends patent protec· tion to life forms. tise is widely available. The enticement of potential medical benefits is an empty promise which will be used to gain access to communities for the collection of samples. Commercialization. Ownership and Intellectual Property Rights The HGD Project l'l!iscs inevitable questions regarding both ownership of the genetic samples themselves and who stands to profit from the commcrcializa.. tion of products derived from the sam~ pies. The Proje<:t puts Indigenous peoples' most fundamental property-their own genes-in the hands of anyone who wants to experiment with them. In dotng so. the Project opens the door to widespread commcrci31ization and potential misuse of the samples and data. The Project will enable "bioprospectors" to stake legal claims on the natural genetic resource base of Indigenous pe:o· 14 pies. Some of those claims will strike it rich, in the fom> of profitable patents. As in the case of future medical applications. the d irect benefits from the HGD gene banks will go to those who can arTord 10 invest in research , manipulation and commercialization of the genetic data. Patent law will be the primary vehicle which enables scientists to secure exclusive rights to the genetic samples. Patent laws gl'llnt a limited propcrt)' right to the patent holder and exclude others from using the patented item for a specific period of time. usually for n 17 -yeaq>eriod. Patenting Human Genes Since 1980. when the US Supreme Coun ruled that the creation of an oil· t..1.ting microbe ls patemable. there has been a disturbing trend in US patent law that extends patent protection to life forms. Since then, the US Patent and Trademork Office ( PTO) has granted patents for newly created micro-organ .. isms, living animals. and for human tiS· sues and genes, b reaking the longstanding policy thm animate life forms were not patentable. The National Institutes of Health. and others. ha,,e secured patent rights for fl'llgmcnted gene sequences. many with unknown function and physical significance. This lrend has enabled research inslitutions and corporations to secure patents for almost 5% of the entire human genome, and has spurred a ntsh for o'vnership of the remaining 95% of the human genome. Does anyone have the right to own a life form or to commodify parts of the human body> While many debate the ethical and mol'lll implia.tions or patenting life fonns, in 1993 US Secretary of Commerce Ron Bro"" filed a patent claim on the cell line of a 26-year-<>ld Guayami woman from Panarna. Her ceH line was of interest because some Guaya.mi people carry a unique \~rus, and their antibodies may prove useful in AIDS and leukemia research. Fortunately, intetnational protest and action by the Guaymi General Congress and others led to the withdrawal of the patent claim by the US Secretary of Commerce in November 1993. Patent claims have also been filed by the Secretary of Commerce for the cell lines of Indigenous people from the Solomon Islands. The Solomon Islands Government has demanded withdrawal of the patent applications and repatriation of the genetic samples. citing ar1 invasiort of sovereignty, lack of informed consent. and moral grounds as the reasons for protest. In early March. Secretary Ron Bro\llfl rejected these requests. stating that .. there is no provision for considel'lltions related to the source of the cells that ma)' be the subject of a patent application." In other words, according to existing patent lav..•, the source of a genetic sam· pie is irrelevant. Indigenous people must be aware that it may be extremely difficult or impossible to recover or reparriate sam· pies of our blood, tissues. or body pans, once lhty arc remo·ved from our bodies and stored elsewhere. In 1984 john Moore filed a lawsuit claiming that his blood cells were misappropriated while he was undergoing trearmem for leuken'tia at the University of Califomia. los Angeles Medical Center. During his trealmem. Moore~ doctor developed a cell line which proved '"'luable in fighting bacteria and cancer. The UCLA Board of Regents r.led a patent claim on this cell line from which they developed commercially valuable antibacterial and cancer-fighting ph3rmaceuticals. Moore claimed that he ' v:IS emltled to share in pror.ts derived from commercial uses of Abya Ya.a News l �PERSPECTIVES ON B IODI VERSITY AND I NTELLECTUAL PROPERTY these cells ~nd any other products resulting from reseateh on any of his biological materials. In a significant l990 California Supreme Coun deci· sion. the court established that '"donors· do not have an IPR property right in the tissues removed from their body (6). genes. Sample Collection seems like sc.ience fiction to many peo- The HGD Project will seek the conscm of the individuals and populations to be sampled. Questions of what con- ple. it is a reality. Through genetic engineering, scientists are capable of reprogramming the genetic codes of living stiuncs '"infomled consem" ~md how it will be secured remain to be answered. The HGD Project has secured a gram things to meet societtd or economic goals. Transgenic experiments can rni.x pJam genome with that of animals. and human genome with that of plams or animals. The ethical and legal questions prillls· cf living organisms. C- rle technofo· c gy ma,~cs it possible tc isofatt, s-plfct. insert, rearrar1ge, r-ecombiru: aJUI mass-r·ep!Q{II~Cc placemal tissues as sources for genetic samples? How will the project be explained in the local language? Will the full scope of the project and the short· Vol. 8 No.4 about the full scope or this project and the potcmial dangers of genedc manipulation before they decide whether to participate. It is impermive that our communities become fully aware of the Projects implications and begin documenting proposed or current sample According to existing patent law. the source of a genetic sample is irrelevant. collecting. 'Vlc need to form an interna.. Nonetheless, this area remains vinually tiona! Indigenous research group to unregulated. determine the e.xtent of existing interna· tional protec,tions for human materials. While the HGD Project itself does not plan to do genetic engineering. no safeguards exist t.o prevent others from doing so with the HGD genetic s.1mples. Genetic manipulation mises serious ethical and moral concems for Indigenous peoples. for whom any vi<r lation or the natural order of life is abhorrently wrong. Scientists are genet· ically manipulating existing life fonns. altering dte course of natural evolution, and creating new life forms. Genes are living organisms which reproduce. migmte and mutate. The full implications or genetically altered life forms released imo the envirol'tmem cannot possibly be anticipated. tlal uses or the samples be fully dis- Recommendations Indigenous organizations need to closed? \\r,ll donors be fully informed of the potential for pro£hs that may be alert all Indigenous peoples to the work made from their genetic samples? of the Human Genome Organiz.atfon (the body governing the HGDP) in order \Vith ger~t: lic engineer-ing ca.lmology today. it is P"Ssiblc to manlpulatt the 'bh•e· genetic materials that raised by genetic engineering technolo- gy are nurncrous and unanswered. a.nd long·term implications and poten· Other Potential for Misuse Ml)' community education ax'ld discussiOt\ -Andrew Kimbrell, The Human 8ody Shop. 1994. Though genetic engineering still from the J.D. ~nd C .T. MacArthur Foundation (despite the expressed opposition of Native leaders) in order to develop a model protocol for the collection of genetic samples from lndigenous groups. The concept of "informed consem· rniscs m3ny unanswered questions in the minds of Indigenous peoples, such as: Who is authorized to give consent? Should consent be required only by the individual being sampled, or also include the governing body of that par· ticular tndigenous nation? C.."\n consent be granted by government o!ftcials or the nation-state in which Lhe Indigenous nation is located? How will permission be obtained for collection o£ samples from the deod, or for use or fetal and reclaiming have already been taken. Indigenous people must engage in and to develop additional policies which insure the protection of our imellecLUal. cultural and biological propeny rights. Indigenous people must call for a world-wide mor3torium on the collec· tion, datab:~sing. transformation. and commercialization of cell lines and genetic materials of Indigenous peoples umil international standards and regulation are put into place which fully pro· teet the environment and the interests of Indigenous peoples. For Mort lnf()rmation Omrace Debra Harry, P. 0 . Box 72, Nixon, Nt:\'ada 89~24. 002) 574·0309 tmail: /)(bra_Narl)•@Togc:ther.org or dharry@igCAJX:.OI); jcanncut Atmstrc>ng. En'ow- in Ctnue, 257 k 8fi.UI.SWici.: Sttetl. Pt:nlteton. BC V2A l n materials by this project, or by free-lance (604) 493-7181 RAFl·Canada. (Rural Ad\'at~Ccmtm Fowtdation tncemalfonal), Suite 504-7 J Bank Sl'""· Oua..·a. Onwrio KIP 5N2. (613) 567· scientists. and to assist groups in 6880 lO pre,·ent the taking of their genetic 15 � Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Vol. 8, no. 4 (Winter 1994) Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource The Human Genome Diversity Project: Implications for Indigenous Peoples Type The nature or genre of the resource Journal Article Creator An entity primarily responsible for making the resource Debra Harry Date A point or period of time associated with an event in the lifecycle of the resource 1994 Language A language of the resource English English Zotero Title The Human Genome Diversity Project: Implications for Indigenous Peoples Item Type Journal Article Author Debra Harry Volume 8 Issue 4 Pages 13-15 Publication Title Abya Yala News: Journal of the South and Meso American Indian Rights Center (SAIIC) ISSN 1071-3182 Date 1994 Language English Abstract Note The Human Genome Diversity Project seeks to collect genetic information from indigenous peoples across the globe. Indigenous communities should be hesitant to comply, given the potential for misuse and exploitation. Attachment Title The_human_genome_diversity_project.pdf Attachment URL [No URL] Genetics Human Genome Diversity Project Intellectual Property Rights Patent Law https://www.abyayalanews.org/files/original/f9f5b820210e1dca86e7e2e2899bf9b9.pdf 36b9caa2be9ad85f5cf18bc8623a5ebf PDF Text Text 1993 YEAR OF INDIGENOUS PEOPLES Stealing Indigenous Genes Genome Project Places Indigenous Peoples at Risk A band of molecular anthropologiSts are planning to collect samples from the hair roots. cheeks and blood of 722 "endangered" Indigenous peoples scattered throughout the globe to tmmortallze their genetic make-up and possibly tum a profit. AdraftreportfromthesecondHuman Genome diversity Workshop held at Penn State University on October 29-31, 1992 refers to Indigenous people as "Isolates of Htstol1c Interest (!Hrs), because they represent groups that should be sampled before they disappear as Integral units so that their role In human htstory can be preserved.· By recording gene codes the plan's partiCipants hope to find unique genes which can be used to cure diseases. which they wl1l patent and make millions. The plan ts being advanced by the Human Genome Diversity Project. an Informal consortium of universities In North Amertca and Europe backed by the u.s. National Institute of Health (NIH) as part of the Human Genome Organization (HUGO). HUGO ts the mult:Jnatlonal. multl-bJIIlon dollar lnltlative to map the human genetic structure. Part of the plants to leave a duplicate sample of the DNA of each Indigenous community with their national governments or regional inStitutions. Access to an IHrs complete genetic make-up makes It theoretically possible to devtse cheap and targeted biological weapons trained solely on that community. Human rtghts violations againSt Indigenous peoples, by their own governments and/ or other governments within their region, ts a major cause of their "physical exUnction·. Permaneotsamplesofhumangenetic material are invaluable to the Human Genome Project and to medical research. Under 10 U.S. law, any products or processes dertved from the unique collection wl1l be patentable. The commercial profit In Indigenous germplasm was brought home to pharmaceutical companies earlier thts year when th.l rty clti?.ens of Llmone, an ISolated ltaltan community. were dlsoovered to have a unique gene that codes againSt many forms ofcardlo· vascular disease. Swedish and Swiss phar· maceutical companies, as well as the Univers ity of Milan. have since swarmed over the townspeople, taking blood and other samples and applying for patents. If the gene can be turned Into a marketable drug the profits wl1l be tremendous. Will Indigenous peoples have a share In such profits? The members of the Human Genome Diversity Project estimate that an lnltlal five year sweep of relatively accessible populations wl1l cost between $23 million and $35 million and wl1l allow sampling from 10 ,000 to 15,000 human specimens. White blood cells from each person wl1l be "tmmortall?.ed" at the American Type Culture Collection 111 Rockv111e. Maryland. Human blood can only survive 48 hours outside ofstorage so samples collected wl1l have to be air-lifted Immediately. ·one person can bleed 50 people and get to the airport In one day," the report estimates. The Indigenous Peoples and Health Workshop held In Wlnnlpeg. Canada Aprtl 13·18, 1993, wh!ch wasorganl?.edbythe Pan American Health OrganiZation (see article page 11), passed a resolution crtticl?.Ing the Genome project. The resolution states: This Is yet another example of research being done on Indigenous people With· out their consent and Without all relevant Information being provided to them. The consequences of thts research have not been fully explored nationally, interAbya Yala News �1993 Y EAR OF INDIGENOUS PEOPLES Pan American Health O rganization Conference on Indigenous Health The fust conference ever sponsored by the Pan American Health Organl7.atlon that focused exclusively on Indigenous peoples health ISSues was held from April 13 - 18 In Villa Marta. Wlnnlpeg Canada. Forty Indigenous delegates from South, Meso and North America as well as Canadian government and non-governmental representatives attended the Indigenous Peoples & Health Workshop '93 "In hopes of launching a dialogue on the health status of Indigenous peoples.· Presentations. seminars and dlseusslons addressed the gravity ofthe health crtsts In Native communities. covertng topiCS rangIng from the dearth of health services and faclllt!esln Native communities. to the slgnlficant role of traditional Indigenous medicine. to the ominous Human Genome Development Project. Poverty, oppression and lack of self-determination were seen to be the prtGenome continued nationally. or In consultation with Indigenous people. Thts type of research wlll have a negative Impact on future health programs and projects In Indigenous communities. by un dermining Indigenous peoples' trust In the medical and health professions. Source: Rural Advancement Founcia· ttcn International For more infonna~on contact SAIIC or: Rural Advancement Founda~on lnterna~onal 71 Bonk Street, Suite 504 Ottawa, Ontario K1 P 5N2 Conado Tel: 613-567-6880 Fax: 613-567-6884 Vol7 Num 1 & 2 mary culprits of the alarming health situation confronting Indigenous peoples. In light of the crtsts. a recommendation to declare a state of emergency In s peclflc communities and populations was p ut forth. Systematic community participation In definIng and Implementing health poUcles was regarded as crucial for achieving positive results. The necessity of pursuing ongotng efforts to defend Indigenous lands. Improve nutrition and housing. prevent environmen tal pollution, and legalize Indigenous m edicine and practices was diScussed at length. As a result of thJs conference. a com mtssJon of Indigenous delegates. working In conjunction with PAHO to promote Indigenous health Issues on local. national and International levels ts being established. In addition. an Int ernational task force dedicated to ensurtng that Indigenous health tssues find a place on the agendas of any meetingS pertaining to Native peoplests planned . as well as an Information network to educate and update Native com- Deleg(JleS to the PAHO confertnce from left to right: Rosa munities on rel- Baldiz6n, Maya (Gu(Jlemola): Rosa .Garcfa. Purepecha evant ISSues and (Mbcico): Carmen Pereira. Mojeiia (Bolivia); Yoltvula n ew developments Nahuelcheo, Mapuche (Chile): and Gilberta 8(Jlz, Maya ' concerning health. (Guatemala) 11 � Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Vol. 7, nos. 1 &amp; 2, (Winter/Spring 1993) Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Stealing Indigenous Genes: Genome Project Places Indigenous Peoples at Risk Type The nature or genre of the resource Journal Article Date A point or period of time associated with an event in the lifecycle of the resource Winter/Spring 1993 Language A language of the resource English English Zotero Title Stealing Indigenous Genes: Genome Project Places Indigenous Peoples at Risk Item Type Journal Article Volume 7 Issue 1&2 Pages 10-11 Publication Title Abya Yala News ISSN 1071-3182 Date Winter/Spring 1993 Language English Abstract Note The controversial topic of researching and "immortalizing" the genetic code of humans is discussed. The Indigenous Peoples and Health Workshop in Winnepeg, Canada criticized the Genome Project on grounds of exploiting Indigenous people. Attachment Title Stealing Indigenous Genes-Genome Project Places Indigenous Peoples at Risk.pdf Attachment URL [No URL] Human Genome Diversity Project NIH Pan American Health Organization The Indigneous Peoples and Health Workshop Winnepeg Canada https://www.abyayalanews.org/files/original/fbbc18c22f99b58cbe5d0d121138ed40.pdf cf237d8d27139d3e68a691a4b16cc79b PDF Text Text '7o rake human DNA and parent its p roducts, that t~iolares the integrity oflife itself. and our deepest sense of nwrality." Isidro Acosta, President of the Guaymi General Conguss. ''When a foreign govemment comes into a coumry, takes blood witlww explaining the real impUcarions to local peoples, and rhen tries to patent and p rofit from the cell line. that's wrong." P01 Mooney, RAFI Executive Dirtcror. you haven't heard about scientifiC en the method of execution to the exclusion of ally. From financial compensation to the deavors relating to the Human Genome, Native representatives in project discussions, potential for biologjcal warfare, it is essential yousoonwiU. Aswe plunge <leeper that all foreseeable consequences and into the decade, the bcxlfellows, bioimplicationsassociatedwitbtheHGD llnm.l!l Cit'nontt· = Hlo . c~oc~ gt'lk"'· tolll.lillin~...: .111 tcx:hnology and science, are having a Projcx:t he taken into account before indi\ idtldl.... t wn-dil. u\· inhu cn.llion. lnuod in.tll !llt· dircx:t impact upon Indigenous comfurther damage occurs. < dl' l 1! .1 llunt.Ul I )( 'ill}.!. munitieswitbovenidingrepercussioos I h u ll-111 <it ·notm · 1 llg.tniz.tlit ,,.., Ill " ;c 1 tl >. ~~ ·d in I .on< for humanity at large. In the previous 11.\CKGROt:\ll doll! r ill. lilt i.t\ ,IIIII ol (it"ltti!IK' (("'-('.lit ll- \\.lllt"l Abya Yala News joumal, we provided Bothun. I'H" ... idt 'l\1 ci .. UII'' C.Hl!OI. \"1' a sketch of the HumanGenome DiverGuided by tbe premise tbat the ge· sity Project. Since then, much more netic composition of different ethniC Jhul\.111 (it'llOillt' IJi\t'l'il\" Pwjn 1 d !Cil> t•rojn IIl 'lopo~ll lot ollt"( I ,l!ld '!lid\· gt'I"K'Iit 'Ill It 1111<' ol information has been made available groups may vary slightly , the project \ ·, niott... 1·f llllit group... . \ lot ....t • it Hl'n.,llit 111.11 t on.._. u · and patents applications on Native organizer.; aspire to gain a better litull ol ttJ11\t'1'11i<· ... ,tnd ...t it'llli' l' 1h.11 .tilltlo }.!.llhn peoples' eelllines bave been revealed. under.;tanding of why diseases vary blood. ).,tit .ttMIIlltlttih ..... uupk" ol l,ugt·lnl pop11l.1· The following article hopes to eluciso much in their geographic distribu· lion... t on... itk-t nllo he Oil lht· ""'-<"1}-!t"' o l c\littt lion date the various components and imlndi}-..'t.'lltttt-. gtottp... w lnu·d to . 1 · t...tl!.ttc... ••I Ill'· ... tioo and from there, try to find out if In t i(" hllt' lt"'l.- l"tilll.tl\" l'to jn I h llti.llot: l.tti;.:,i I.Utd plications assoc.iated with the Human such variation is caused by human ('d\" lh·...,!OI/•1. l'lnft·..,..,ot Lnlt"liltt... ol c;ctM'III' ,11 , Genome Diver.;ity Project, highlight· adaptation to local environments or Sl.lllhtttl ing its impacts on Indigenous Peoples changes in genetic make-up (5). around tbe world and course of action Through these findings, it is boped taken thus far. that new methods of dealing with While the potential benefits sbould not he are being seriously questioned by Indigenous fatal diseases, i.e. cancer, AIDS, etc. wiU he underestimated, all oftbe related issues, from organizationsandsupportg,oupsintemation· developed. I 12 . Abya Yala News �NATIONAL. INTEH \IETIIOII Through RAFI's research, it is known that 712 groups have b«n !Mgeted for sample collection. The following ootline provides a brief overview of the sampling and lab research process: ceU line has b«napproved how will compensation be determined? Wbat systems arc in place for assuring that Indigenous peoples will be appropriately compensated on all commercial gains? To date, these questions have not b«n answered. ing the instiMions that have waged an unbridledwarofopprcssionandgenocidcagainst Native peoples for the past 500 years. Ill. IIIOI.I)(;J('\1. II \lll-'.\llE l hll ii.UI (it 'll(IIIJ<' Prnwt I· I ·.s !.Collect blood, hair and mouth scrapings from selected population 2 Once gathered, samples rushed to lab(witbin48bourstiJm)wberewhite blood cells are to be "immortalized" a)wbite blood c:dls are cultured in the lab tben (men in liquid niuogco. Each cell contains a complete set of genetic DNA. This process allows the information in the genes to be preserved indefinitely for ful1Jrcsrudy. 3. Once in thi~ form, cells are l1Jmed intocelllincs( continuoosly dividing cells that can provide a theoretically infinite supply of genetic material). '4. DNA to be dcpooited and stored in scvenal "banks" around the world. Tbedcpooited material will be available for funhcr research. Results from resco.rch an then be patented tTIIt'W i' .t!'o \ lt•dit oll l k'-t.'oU< II ( 'tiUIIt ti1 \ IIH ~ l l un ~. 11 1 ( it'· nomt· .\l.lppul).! Prow< 1 11 1 Lnndot1• \ .... ~ l 1dltnn c llnrl \\I \I( II bq..~olll i ll I' lXX \\Jill lilt' )..:.11,11 ol IJI, IJI\IIIlg l"ottll til lh' l l • l.t il • l }.!!'Ill'' !CIIIJ)(j \\ tl illll t ltr~• lli'II....CII l iC '' .u~d "--'t[tln)lul;...:. 1lw nl- liw "'lft'ltll ol hn)(k·tl h\ •'1111 htull,\11 D' \ h\ !It~:• l , u ld li'lt ' l S ![)( ' \t'.l! .,!t l l'"; ,,111111\.1) ht...,!l:tUt ' ~•llh·.!~:1l S. llt'j).HitUt'lll o! l_u·rg\ 1DOI.• PI, 1\ ·c·r..., : I , , \lllt'fll olll 1\'J M.' ( :11Jit 1 ' ( CIJIC~ II~ Ill , l{t It )... \ 1llc' ft ~11). lhllthllg_ j)IIJI JI lei! olii i\'Jlt'' ul (~ l]]c •t IICll l: hO.OOI 1 r, m • llldlt 'I i,ll' II 0111 \ r, I ' I In I nn tl.IJ 1 t and pt.uu \ 'iHI"-''"" L\1. l.t•g,ll dt'J)(I...,i l t'IJ, lor li\·illg ™"' llldlt'lidl h\' l'.S. P.llt ' lll ollld TJcld t 'l llclfh..., I I[ !it l', :!. l'ti\,llt' hintt·t llnu!og~ · < tllll)lolllit'' :t \',Hioll' UIU\t'r...,i ltt '"' illt ht<IHlg: l 'CI .. \ . l'C Bcrhdt'\". Slctlllord. Yollt • In tcnnsoftbe ~nenal Agreement oo Tariffs and Trade (GATI), the United Sates is doing everything it an to make p<~tentingofall formsoflife a legal pall of tbc trade agreement Ifpassed as an intem>tional mandate, how will The fact that Indigenous representatives and organizations have not b«n consulted lndigenoos pcgple be able to hold governments, or included in the planningproecss thus(ar, instil1Jtions,corporationsaocountablewhensueh illustrntcs the patemalio;tic way in which tbc accountability will be regarded as a "barrier to projcct is being condUCled. Issues relating free trade?" to patentS, diversion of funds, access to II. STOR.\GE F.\('ll.ITIL~ gathered informalionandthe potentialtbreat ,\ \1 OIU.IIII \\1\ OF '11\.\' of biological warfare have yet to be addressed satisfactorily by project organizers. The idea is to create various "world banks" of DNA around the globe that woold include I. 0\1 WIN Ill' \\II P.\ TE\TS borh regional and natiortal storage facilities and It is a fact thai some products and pro- be accessible to government agencies, corporacesses f<'lated to extracted material will lions, foondatiom, and interested rescortbers. havesuhswllialcommercialvalue. Oncea In otbet words, tbc information will be made patent on material extr1aed from a buman available to an)'one who shows interest, ineludVOl. 7 NO. 3&4 In the context of genocide, marginalization, denial of traditional c:ulture practices, who is to say a govemmen~ with a history of awession toward Native populations and, in most ofthe eases, responsible for the it physical demise, will not take the readily accessible information and use it to eOOicate an "inuansigent" group or people? are sympathetic geneticists who fed that tbc feasibility of producing wgeted ethnic biological warfare makes the poosibility a long shot, but not oot of the question. Wbere are the controls? II. Ill\ l·. llSIO' 01- H \liS ' The exorbitant amoont of money necessary to imple~nt the project eoold be used to improve the present squalor that many of the targeted groups live in. In otbet "ords, tbe money eoold be spent oo helping the groups that are foc:ing "extinetioo"tooveteornC the various fortes that have placed them in this critical predicament so that tbcy an lead bcalthy, productive and self-directed lives now, rather than being recreated and "immonaliltd" in laboratories for future science projects. TilE Gl'.\ \'\Ill' \ '11-'\ 1'•.\ (;(.1\II'SE OF TilE Fl Tl llE (;0\E .\lillY \\OHSIII \RS( '0\11 I HL 'I· Despite tbe efforts of HGD Project organizers to make it appear be nip, equitable and absolutely necessary, the recent patent claim application on the cell line of a 26 year old Guayami woman from Panama, by U.S. Department of Commerce Secretary Roo 13 �Brown, illustrates tiM> underlying dangers and At the recent Second Continental Encoun- fused and anonymous makes monitoring even potential for the projec:tto get out of eonlrol. ter of Indigenous Nations, Organizations and more difficult. Thccballengc, then, is to make Collec~ed under dubious eircumslanees, the Peoples (CONIC), representing over 2,500 sure that research of!his nature stays transparwoman'secllline isbeingstoredattbeAmcri· communities and organizations throughout ent and accountable. canTypeOiiturcCollection(ATCC). Inquir- the Abya Yala eon tinen~ issued a resolution However grave the situation may seem, ies made by Isidro Acosta, President of the denouncing gcnomerescarcbandtheGuaynni positive and effective action can be taken by GuayamiGeneraiCongrcss, and Pat Mooney, patent claim. As infonnation aboullbe projec~ individuals. International pressure demand· Executive Director of RAA, about the cell reaches Native communities, opposition until ing !hat all types of related genetic research be line being repatriated to !he Guaymi conducted wilh clear, structured and people, have been met with ambigudirect involvement oflndigcnous or( :o"f .n1d i'"ullding: I !( il l I 'r 1;n ; I: 11 i 1, 1: I1\ t '·\ t 'd!' t 'lit )J\ 1"' t '\.j )( 't ted ous responses and lillie action. Thus, ganizations so lhatlhey arc an integral to< o:-;1 l>cl\\ I.'Cll ..._:..? ~ .~:1d ·;_-, Jlli!lio!l dfl~:.~: ..... !hecell line remains in the bands of the part of tiN> decision-making process, is L\;x·< tn! 11 1 ..;.. l :il!J~t- lruln Hl_IU) · 1.-,_U){ I !l~i ­ United States government and the vital. As tbe possibility for "a small lll.lll ...!l<'t illlt'll'"' \\t'J,I~~t·tcl],l! ( tl..._l Jlt 'f ~Hiljl]t· ATCC against tiN> wishes of tbe origi· number of corporations, universities, t.l:t.'...:.t'"' !1<1:11 ~~.1•1 l~l ,1"' Ju~~i1 .1~ ~::~xJ c~ · nat "owner." and govcmmcnrs owning life's genetic Curren:!\ ~cdi.lll.'~ !ll:Hiu~;..:. ~olH<('~ tro:n :- ~~~\· On a broader level, if the U.S. code,"(1) turns into reality, tiN> time to t'rtl!lH'll! ,l:~t'l\1 H ' "' ,lJJt! Jl!l\-, l:t· l4lli:Jti,tl:ll!l~. government manages to make tbe mobilize is now! tu nt1~:1:~ \\illrn•J..,l ~i!--;.d\ t~Jrll<' tf1J:!l tlw :\,li:<J:t. tl patenting of human material legal Sc:t'!Ht·h~o~tr:cl,ltl<l:J II<JjX'j...,\<ICJ)J:.IJ:J ...rJ:IH'<Jt underGAlT,disputingapatentclaim \\II\ T YOl" C.\\ JlO: \ lit ' IIIIJ!lt'\ gt.Jtl\t 'ti ]IJ l)j{' l!lll t l, lll (;t•:I<Jl!H" and repatriation would become !bat J•H iit't\ much more difticull To make mat· fi nd out who is doing research in II. I hull; Ill (it ·nonw Projt "< I L '\J)( ·ned 11 1ldl t c1.._: ters worse. tbere are reports of otbcr your area and bow it is being moni· ~:~ IJ:)!tfll\Hl IUIW.._lllt' grd!ll!llo:Jt"\" u ... t!~l:J\ .1!· possible patent claims on Navajo cell tored. Urge that indigenous orga.nizalul!t"d tor ..,t Lt'lllil:l l"t ''""t'dH 11 Fund1:l~ t ro:ll :lw lines as well as prodigious cell line tions be consulted, informed, and in· :\!II dtlt I I)( II: collection going on in Colombia. (6) volved during every phase of tbe Along with !he Guaymi eommu· projec~. for more information contact nity,lndigenous peoples and organizations as Indigenous organizations are properly con- Professor Henry Greely, Head of tbe North well as a growing number of concerned scien- sulted, informed, and directly involved, bas American Ethles Comminee at the following tisrs areverbalizingtheiroutrage. There have been !he resounding response. address: beenvariousresolutionsdenouncingtheHGD Project by first Nations. The Mataatua CO\CI.l SIO\ \\ll C \I. I. TO \CTIO\ DeclarationonCullural and lntellec:tual Property Rigbrs of Indigenous Peoples in June, At this poin~ the HGO Projec~ bas not Professor Henry T. Greely 1993, stated the following: received the substantial funding it requires to Professor of Law Call for an irnmed.iate halt to the ongoing be carried out and therefore bas the potential Stanford Law School 'Human Genome Diversity Projec:t' until irs of being stopped. However, before breathing Crown Quadrangle Stanford University moral, ethical, socio-econonnic, physical and easier, it is important to take a look beyond tiM> Stanford, CA 94305-8610 political implications have been thoroughly immediate situation. lftheHGD Projec~ does fax: 415.725.0235 discussed, understood and approved by In· not materialize in irs grandiose form, tbe e-mail: digenous peoples. possibility of genome researeh bceonning dif· Henry.Greely@I'Qrsythc.Standford.EDU j I. RAF1 Prm 8.deas<, "lndig<nou< P"'91e Pro<"' U.S. Sccttlal)' or Coolmer« Pa1cn1 Oaim on Guaymi Indian Cell Unc," IM5fl3 l Sud>cl, Gabrielle "Wo.kl W">dc Gene Study May Re,·<al Human H~IOI)'· s..nroro Obo<Mr, Juty-AugUSI 1993 .J:.-d., 3. RAF11bePanTh>l Feeds Us" ~ ~~ 4. RAF1 Coolmuniqut, "PaleniS, lndig<oous Peoples, and Human Groclie Oi,.rsily" M 1993 ay S. New Scicnlist, M 1993 ay l 6. RAFt COn<$(>ClCid<nc< wilh tsi<fto ACXIOU, S.pu:rnber 21, 1993 1. Wuelhrich. Btmi<» .,AJI Rjght:s Reserved, H lhe Gene·Patcnling Race is A.ffeding Sciertee,.. Scicnoe News, Vol 144- Septe--mber 4, 1993 ow 14 """)• Abya Yala News � Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Vol. 7, nos. 3-4 (Fall/Winter 1993) Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Gene Genie and Science's Thirst for Information with Indigenous Blood Type The nature or genre of the resource Journal Article Creator An entity primarily responsible for making the resource Daniela Spiwak Date A point or period of time associated with an event in the lifecycle of the resource Fall and Winter 1993 Language A language of the resource English English Zotero Title Gene Genie and Science's Thirst for Information with Indigenous Blood Item Type Journal Article Author Daniela Spiwak Volume 7 Issue 3,4 Pages 12-14 Publication Title Abya Yala News: Journal of the South and Meso American Indian Rights Center (SAIIC) ISSN 1071-3182 Date Fall and Winter 1993 Language English Abstract Note Concerns about the impact of the Human Genome Diversity Project on Indigenous Peoples are raised. No indigenous representatives or organizations have been included in the planning of the project. Misuse of information gathered during the project has become a concern. Attachment Title Gene_Genie_And_Science's_Thirst_For_Information_With_Indigenous_Blood.pdf Attachment URL [No URL] CONIC Human Genome Diversity Project Human Genome Project Mataatua Declaration on Cultural and Intellectual Property Rights of Indigenous Peoples