SYMPOSIUM Cultural Challenges Introduction Our society … · 2007-12-04 · GENETICS AND GROUP...

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SYMPOSIUM Cultural Challenges to Biotechnology: Native American Genetic Resources and the Concept of Cultural Harm Rebecca Tsosie Introduction Our society currently faces many complex and per- plexing issues related to biotechnology, including the need to define the outer boundaries of genetic research on human beings and the need to protect individual and group rights to human tissue and the knowledge gained from the study of that tissue. Scien- tists have increasingly become interested in studying so-called "population isolates" to discover the nature and location of genes that are unique to particular groups. Indigenous peoples are often targeted by sci- entists because "the relative isolation of the commu- nities ensures minimal gene flow."' Such studies raise a number of issues related to privacy rights, property rights, informed consent, and group rights versus individual rights. These issues recently came to light in a case brought by the Havasupai Tribe and its mem- bers over the use of blood samples, handprints, and genealogy information initially taken by researchers at Arizona State University (ASU) for a diabetes project. These materials were then allegedly used by research- ers at ASU and other institutions for a multitude of unauthorized purposes, including research into the frequency of mental health disorders and the origin of human populations.2 Consequently, the affected members sued for damages under several legal theo- ries. However, underlying all of these claims was the allegation that this unauthorized use of genetic resources and data not only injured the individuals who gave samples, but also caused a collective harm to the Havasupai Tribe and the cultural and spiritual beliefs of its members.3 The predominant approach of bioethicists is to determine the limitations of such research according to the secular systems of ethics generated by Western philosophers over the past couple of centuries. This ethical framework also governs our legal concepts of property and privacy, which construct the actual rights of litigants in American court systems. Thus, contemporary courts distinguish between the property rights held by persons while the body is intact versus the rights held when blood and tissue are removed.4 This difference suggests that certain interests are bet- ter adjudicated under contract or tort theories, while other interests merit protection under privacy law, and still other interests merit no protection (such as what appear to be "privacy" rights articulated in the context of human bodies that are dead). Thus, claims made by an individual or group that are perceived Rebecca Tsosie, J.D., is the Willard H. Pedrick Distinguished Research Scholar and the Executive Director of the Indian Legal Program at the Sandra Day O'Connor College ofLaw at Arizona State University. JOURNAL OF LAW, MEDICINE & ETHICS 396

Transcript of SYMPOSIUM Cultural Challenges Introduction Our society … · 2007-12-04 · GENETICS AND GROUP...

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Cultural Challengesto Biotechnology:Native AmericanGenetic Resourcesand the Concept ofCultural HarmRebecca Tsosie

IntroductionOur society currently faces many complex and per-plexing issues related to biotechnology, includingthe need to define the outer boundaries of geneticresearch on human beings and the need to protectindividual and group rights to human tissue and theknowledge gained from the study of that tissue. Scien-tists have increasingly become interested in studyingso-called "population isolates" to discover the natureand location of genes that are unique to particulargroups. Indigenous peoples are often targeted by sci-entists because "the relative isolation of the commu-nities ensures minimal gene flow."' Such studies raisea number of issues related to privacy rights, propertyrights, informed consent, and group rights versusindividual rights. These issues recently came to lightin a case brought by the Havasupai Tribe and its mem-bers over the use of blood samples, handprints, andgenealogy information initially taken by researchers atArizona State University (ASU) for a diabetes project.These materials were then allegedly used by research-ers at ASU and other institutions for a multitude ofunauthorized purposes, including research into thefrequency of mental health disorders and the originof human populations.2 Consequently, the affectedmembers sued for damages under several legal theo-ries. However, underlying all of these claims wasthe allegation that this unauthorized use of geneticresources and data not only injured the individualswho gave samples, but also caused a collective harmto the Havasupai Tribe and the cultural and spiritualbeliefs of its members.3

The predominant approach of bioethicists is todetermine the limitations of such research accordingto the secular systems of ethics generated by Westernphilosophers over the past couple of centuries. Thisethical framework also governs our legal conceptsof property and privacy, which construct the actualrights of litigants in American court systems. Thus,contemporary courts distinguish between the propertyrights held by persons while the body is intact versusthe rights held when blood and tissue are removed.4This difference suggests that certain interests are bet-ter adjudicated under contract or tort theories, whileother interests merit protection under privacy law,and still other interests merit no protection (such aswhat appear to be "privacy" rights articulated in thecontext of human bodies that are dead). Thus, claimsmade by an individual or group that are perceived

Rebecca Tsosie, J.D., is the Willard H. Pedrick DistinguishedResearch Scholar and the Executive Director of the IndianLegal Program at the Sandra Day O'Connor College ofLaw atArizona State University.

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to be asserting a cultural or spiritual harm based onthe alleged misuse or mishandling of blood, tissue, orknowledge gained from DNA analysis may not be cog-nizable within existing legal theories.

This article examines the intercultural context ofissues related to genetic research on Native peoples.The article probes the disconnect between Westernand indigenous normative frameworks to assess theappropriate use of blood and tissue samples takenfrom Native peoples, as well as the appropriatenessof securing information from these human resources,whether such efforts are directed toward commer-cial profit, knowledge used to benefit the nationalor global populace in general (i.e., the "public good"argument), or knowledge used to benefit the discretepopulation being studied. I suggest that the interestsof Native groups cannot be accurately understood orassessed within our legal system unless we attemptto understand the different normative conceptions ofproperty, ownership, and privacy that exist for thesegroups. This article situates the issue of Native rightsto genetic resources within a larger cultural rightsframework that is capable of evaluating distinctiveclaims for cultural harm. This article concludes that,along with new technologies, there is a need to formu-late new concepts of rights, and it suggests an inter-cultural framework for accommodation based on the-ories of intergroup equality and fundamental humanrights.

I. The Legal and Moral Framework forEvaluating Native ClaimsThe dominant legal framework used to assess rightsto human blood and tissue is constructed around thetangible products to be gained from a human body.5The information gleaned from the study of thesematerials represents an intangible product that isnormally assessed under principles of intellectualproperty law. Importantly, however, the normativebasis for both tangible and intangible aspects of bio-medical research is founded on the same suppositionsand principles. This section of the article discussesthe dominant discourse on concepts of property andprivacy and then highlights the intercultural implica-tions of this discourse as it applies to rights in geneticresources.

A. Property Law: The Basic Structure Applicable toTangible ResourcesUnder American law, property is conceptualized as a"bundle of sticks" (each stick representing a right orprivilege) that governs the relationships between per-sons with respect to tangible resources.6 This bundletypically includes the rights to include, exclude, use,

sell, transfer, purchase, and encumber, and the modelreflects the pervasive idea that there are "multiplerights in a single piece of property" and that owner-ship occurs in "multiple layers."7 Importantly, then,the law of property is focused on allocating rights andresponsibilities of ownership between private partiesand between individuals and the collective society.According to this paradigm of property law, privateproperty rights are of predominant importance, andtheories of economic efficiency, moral rights, socialutility, and contract law sustain the importance ofthese rights. Relying on the venerated utilitarian the-ory, contemporary theorists such as Richard Posnerposit that the legal protection of property rights hasan important economic function: to use resources effi-ciently., Posner's theory neatly distills the three crite-ria of an efficient property rights system:

1. Universality: All resources should be ownedor capable of being owned by someone, exceptresources that are so plentiful that everyone canconsume as much of them as he or she wantswithout reducing consumption by anyone else.

2. Exclusivity: Owners should have the incentiveto incur the costs required to make efficient useof resources owned by them.

3. Transferability: If a property right cannotbe transferred, then there is no way to shift aresource from a less productive to a more pro-ductive use through voluntary exchange.9

A key question for consideration is whether this sup-posedly "universalist" conception of property rightscan apply across cultures and across time periods.Many property theorists argue that it can. For example,Harold Demsetz asserts that the emergence of privateproperty systems among Native Americans engagedin the fur trade was a response to modernization andthe market economy that Europeans brought to theNew World.10 Demsetz theorizes that Native Ameri-cans were persuaded to adopt these more complex andnuanced private property systems because they shareda basic need for efficiency and utility.

How would we evaluate such claims within anintercultural framework? Although Native peoples'property systems are tribally specific, they share manysimilarities and are generally based on a very differentnormative framework from Western property systems.Tribal property systems tend to be group oriented andmay have aspects of both collective and communalownership. Collective ownership systems place own-ership in the community, but may allow individuals toacquire superior rights to or responsibilities for partof the collective property. Communal ownership sys-

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tems, on the other hand, do not pernacquire special rights to any part of tIvis other community members.

Native property systems also inclrights" that attach to property, but mocouched in terms of certain dutiesand responsibilities that peoplehave with respect to resources. Thenotion of alienability is not a corefeature of such systems, althoughmany types of property are alien-able, either within the societyor even outside of the society.Other categories of objects maybe strictly inalienable, dependingupon the purpose of the object (e.g., athe collective future of the group or itssion) or because of specific group reduties for the appropriate care of obje

Indigenous property systems mayvalues that are not generally encoWestern property law. For examplea notion that certain resources haysacred or spiritual in nature. Suchstem from world views that adoptphysical premises about the nature ofbetween human beings and the restThe purpose of the object and dutiesthe object respond to these relationthan to the values about material profundergird the Western utilitarian mo

Thus, although Native peoples cleaof property and also of rights, duties,ties, the normative basis for these cdifferent from Anglo-American sociton points to an essential differencWestern thought "begins with theual separated from organized societfocuses extensively upon the relationvidual to the state.' 2 "Rights are legalimit state action."'3 Or, in relationdisputes, rights can be asserted byagainst another in order to maintaindeemed appropriate by social normswithin tribal cultures, individuals dlated from others in some mythic, diof nature"'1 Rather, "human beingsclosely linked and integrated networship, social and political relations."'5rights and responsibilities exist onlywork of these relationships.16 Norms:munal and group rights "derive fromof mutual respect and respectful behbetween kinship and tribal groups."'7

it individuals tohe property vis a

ide a "bundle ofst often these are

These norms are importantly represented in Nativeproperty systems and are often misunderstood byAnglo-American scholars. Theorists such as GarrettHardin typically associate "communal property sys-tems" with inefficiency (e.g., "the tragedy of the com-

J

Anglo-American intellectual property law providesa poor fit for indigenous peoples' concerns aboutprotecting intangible cultural resources, in partbecause the suppositions about knowledge areculturally quite different for Native peoples.

s fundamental to mons"), but this view makes no sense in a society thats cultural expres- is committed to sharing ownership of resources andsponsibilities or also to rigorous regulation of planting, harvesting, andcts." land use.'8 This communal approach ensures that allalso respond to community members respect the central ethic that

mpassed within resources must be used in a way that is productivee, there may be and beneficial to all members, including future gen-"e a value that is erations. Not surprisingly, the same normative differ-ideas generally ences characterize Western and Native approaches todifferent meta- intangible resources.'the relationshipof the universe. B. Intangible Resources and "Intellectualassociated with Property Law"

al values, rather Anglo-American property law recognizes variousit and utility that categories of property rights in intangible resources,del. including artistic creations (mainly protected byrly have concepts copyright law), technological innovations (mainlyand responsibili- protected by patent law), and commercial endeavors:oncepts is quite (mainly protected by trademark law, but also pro-ety. Robert Clin- tected by trade secret law and legal doctrines, such as:e, which is that misappropriation). Again, these legal protections pri-solated individ- marily rest on a utilitarian moral framework positingy," and therefore that knowledge and ideas are the common resourceship of the indi- of all humankind and normally should be freely avail-1 constructs that able to all. In exceptional circumstances, however,to interpersonal society must accord property rights when necessary'one individual to preserve certain social values and interests (e.g., tothe relationship reward creative enterprise and technological innova-In comparison, tion, to prevent economic harm to entrepreneurs, and

to not exist "iso- to protect consumers against fraudulent or misleadingisorganized state conduct by competitors).are born into a Anglo-American intellectual property law provides

'k of family, kin- a poor fit for indigenous peoples' concerns about pro-Thus, individual tecting intangible cultural resources, in part becausevithin the frame- the suppositions about knowledge are culturally quitereinforcing com- different for Native peoples. Article I of the U.S. Con-basic principles stitution recognizes the authority of Congress to enact

avior within and statutory protections through copyright and patentlaw in order to "promote the progress of science and

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useful arts, by securing for limited times to authorsand inventors the exclusive right to their respectivewritings and discoveries."19 The state awards a lim-ited monopoly to certain individuals to provide eco-nomic incentives to create novel and useful works.Knowledge and ideas are the common property ofall members of society; individual rights to creationsand inventions are the exception rather than the rule.As Justice Brandeis observed in International NewsService v. Associated Press, "The general rule of law is,that the noblest of human productions - knowledge,truths ascertained, conceptions, and ideas - become,after voluntary communication to others, free as theair to common use."2°

However, two problems exist with fitting Nativeclaims into this model. First, the structure of themodel is not amenable to Native claims because itwas generated in response to the cultural assumptionsabout property rights within Western tradition. Forexample, both copyrights and patents protect "new"knowledge (e.g., novel inventions, original expres-sions), rather than existing knowledge, but much ofwhat Indian nations seek to protect is "traditional"knowledge that has longstanding importance to thegroup. In addition, Native societies may be reluctantto "fix" knowledge into a tangible medium that objecti-fies the intangible qualities of the knowledge. An addi-tional problem is that copyrights and patents gener-ally secure the rights in an individual or entity that hasstanding as an individual (e.g., a corporation). Withintribal communities, there may be an assumption thatknowledge is part of the group's overall identity, butthat certain members have the duty to keep the knowl-edge on behalf of the group and that it would be inap-propriate for such individuals to share the knowledge,even with other members of the group. Finally, copy-rights and patents establish a limited, rather than per-petual, protection of the invention or creation. Ameri-can property law frowns on monopolies because theyare seen as causing economic inefficiency and promot-ing socially destructive behavior, such as discouragingcompetition. But limited monopolies are acceptable tothe extent that they promote socially beneficial behav-ior, such as increased innovation. These assumptionsabout ideal social behavior are based on economicvalues and generally do not resonate with Native peo-ples, who seek to protect intangible cultural resourcesbased on values and beliefs that stem from their owncultural traditions.

Secondly, the "voluntary communication" pointsuggests that somehow individuals knowingly give uptheir rights to knowledge when it is expressed to oth-ers. However, Native people would charge that culturalknowledge is being gathered and has historically been

gathered through practices that are hardly voluntaryon the part of the Native group. 21 For example, at theturn of the century, anthropologists flooded the reser-vations, seeking to record valuable cultural data aboutNative Americans before they became "extinct."22

Today, some New Age gurus have appropriated aspectsof Native culture, such as sweat lodge ceremonies,for their own commercial use.23 Thus, exploitationinforms both historical and contemporary practiceand must be a factor in adjudicating Native peoples'rights to cultural knowledge.

C. The Effect of Privacy LawAs Radhika Rao notes, individuals may be affordedautonomy over their bodies under the umbrella ofconstitutional privacy rather than rules of property.24

Cases protecting rights to contraception and abortion,for example, have constructed the human body as thesubject of a privacy interest, and not the object of prop-erty law. The constitutional right of privacy consistsof two principal components: the right of personalprivacy, which is sometimes characterized as a rightto bodily integrity (a liberty interest), and the right ofrelational privacy. According to Rao, the right of "per-sonal privacy preserves the integrity of the body, safe-guarding its inviolability. It includes the right to resistforced invasions of one's body and the right to pre-vent its physical alteration, but it does not necessarilyencompass the affirmative exercise of power over thebody."25 In comparison, the right of relational privacyimmunizes certain "intimate and consensual relation-ships" from state interference.26 Individuals are thusentitled to create and maintain intimate associationsapart from the state, but the doctrine in no way shields"commercial transactions between strangers."27

Rao observes that while property consists of a "bun-dle of rights" possessed by persons relative to objects,privacy may similarly be characterized as a cluster ofpersonal interests that encompasses the right to pos-sess one's own body and exclude others. Unlike prop-erty, however, privacy omits the right to use and theright to transfer and instead focuses on the right toinclude some individuals by joining with them in closepersonal relationships. A number of cases exist inwhich claimants assert rights of control over bodies orbody parts either under property theories or under pri-vacy theories. In the context of cases dealing with stateinterference into the right of a decedent to control dis-posal of his or her body, or the relational privacy rightof family members to make such decisions free of stateinterference, the courts have largely held that "the nextof kin's right in a decedent's remains is based upon thepersonal right to bury the body rather than any prop-erty right in the body itself," and that no common law

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tort action for mistreatment of the corpse would trig-ger constitutional protection.28 Rather, as the courtnoted in Florida v. Powell, "the [privacy] cases recog-nize only freedom of choice concerning personal mat-ters involved in existing, ongoing relationships amongliving persons as fundamental or essential to the pur-suit of happiness by free persons,' and the "right of thenext of kin to a tort claim for interference with burial...does not rise to the constitutional dimension of a fun-damental right traditionally protected under eitherthe U.S. or Florida Constitution.'29

A further problem in these cases relates to thenotion that the privacy right encompassing the rightto make decisions concerning the integrity of one'sbody is a personal right that ends with the "death ofthe person to whom it is of value" and may "not beclaimed by his estate or his next of kin."30 The courtsthat have recognized a right to redress mistreatmentof a corpse have largely done so based on the notionthat the next of kin have a quasi-property right in thebody of the decedent that may justify a claim in tortfor mistreatment (although this tort is not one of con-stitutional dimension).31 The property theory appearsto be more appealing to some courts in the context ofclaims that arise from the appropriation of tangiblebody parts (e.g., corneas) without permission from thedecedent or next of kin. For example, in Brotherton v.Cleveland, the Sixth Circuit Court of Appeals upheld awidow's right to control the disposal of her husband'sbody against a state law that authorized the coronerto extract corneas from decedents in the course of anautopsy without the consent of the next of kin.32 Thecourt found that the "aggregate of rights granted bythe state to the wife in the body of her dead husband,which included a right to possess the body, to controldisposal of the body, and to file suit for disturbance tothe body, rose to the level of a property interest pro-tected by the Constitution."33 In this case, the state'sinterest in enhancing organ and tissue donation wasnot substantial enough to allow the state to disregardthe property rights which it had already granted. Thecourt relied on the broad "bundle of rights" conceptionof property and suggested the following:

The importance of establishing rights in a deadbody has been, and will continue to be, magnifiedby scientific advancements. The recent explosion ofresearch and information concerning biotechnol-ogy has created a market place in which humantissues are routinely sold to and by scientists, phy-sicians and others... .The human body is a valuableresource... As biotechnology continues to develop,so will the capacity to cultivate the resources in adead body. A future in which hearts, kidneys, and

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other valuable organs could be maintained forexpanded periods outside a live body is far frominconceivable.34

As the court notes, modern innovations in biotech-nology require us to identify the conceptual chal-lenges posed by existing legal frameworks and workto develop alternative frameworks that can betteraddress the interests of claimants.

D. Property and Privacy Law and the Protection ofRights to Genetic ResourcesReading the property and privacy cases together as agroup, Rao concludes that property protects the own-er's autonomy over that which is owned (envisioning aperson who "owns" and is thus distinct from his or herbody), whereas privacy safeguards an "inviolable cor-poreal identity" (envisioning the person as "embod-ied" and the body as personified).35 This notion isbolstered by the notion that property rights attach to"objects" whereas privacy rights attach to "persons.'The boundary between the body as person and thebody as object is drawn according to basic supposi-tions that include whether the body is characterizedas "alive" (i.e., susceptible to privacy rights) or "dead"(i.e., not susceptible to privacy rights); whether thebody is "whole and intact" (i.e., considered a "person"who can maintain privacy rights to avoid unauthor-ized intrusion); or whether body parts have been sep-arated from the body and thus may be commodified.According to Rao, this conceptual bifurcation triggersseveral concerns.

The first issue is that of fragmentation. The legalconception of property produces a fragmented rela-tionship between the body and its owner. The bodyparts may be severed from the owner, and an owner's"bundle of rights" can be disaggregated and assignedto several different parties. This issue was apparent inthe Moore case, in which the patient's spleen, blood,and tissue were removed in the course of medicaltreatment and then used by the treating physicians todevelop a patented cell line.36 The California SupremeCourt held that upon his voluntary consent to removalof these body parts, Moore surrendered any propertyinterest in his organs and tissue. The researchers, onthe other hand, gained a protected property inter-est when they used the organ and tissue to develop apatented cell line. In contrast, privacy law foreclosesfragmentation by identifying the person with his orher physical presence. Thus, disassembling rights ina human body may be inconsistent with the privacyparadigm, which identifies the body with the personand maintains the wholeness of the body to preserveits physical identity.

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The second issue is instrumentalization. Privacy isa purely negative entitlement that guarantees secu-rity from governmental interference, whereas prop-erty possesses an affirmative dimension that enablespurposive activity. Constructing the body as propertyallows the freedom to "instrumentalize one's body bytechnologically manipulating it or otherwise puttingit to productive use."37 Privacy, on the other hand,perceives the body as a passive entity to be protected(while alive) from physical interference and alteration,but not mined, manipulated, or exploited for profit.Given this tension, conflicts exist between notions ofindividual autonomy (e.g., to protect sanctity of body,to use body for commercial profit) and ownership ofthe body, as well as potential conflicts between indi-vidual use of the body and governmental regulationof such use.

The third issue is alienation. If the body is property,it can be carved up into its component parts, and thoseparts can be separated from the original owner andtransferred to others. After all, alienability is a centralnorm of property law. Personal privacy, on the otherhand, does not carry the right to sell or do anythingwith one's body. Moreover, the constitutional conceptof relational privacy safeguards intimate, consensualrelationships but not commercial relationships.

The fourth issue is expropriation. Under the DueProcess clause, deprivations of property are consideredconstitutional if rationally related to a legitimate stateinterest, whereas invasions of privacy warrant height-ened scrutiny. Moreover, property can be taken fromone person and reassigned to another upon paymentof compensation, whereas privacy rights are specificto the individual and cannot be reassigned. As Raodemonstrates in the context of the Moore case, the twotheories offer radically different forms of protectionfor the human body. Under a property theory, the stateof California would have the power to extract Moore'sspleen against his will for any public purpose as longas the state paid just compensation for this "taking.'38Under a privacy theory, Moore would have a consti-tutional right to refuse removal of his spleen from hisbody39 "The state could not seize his spleen unless itdemonstrates that such a course of action does not'unduly burden' his liberty interest in his body or isnarrowly tailored to serve a compelling state interestof the general public."40

The final issue is inequality. Property rights areinherently unequal in the sense that some individu-als may own a great deal of property while others mayhave little or none. Property theories actually "presup-pose such disparities as perfectly natural and normal."14Inequalities in privacy, on the other hand, are viewedas especially problematic because all persons possess

an equal capacity for privacy and an equal right to befree from government interference.

As Rao observes, these concepts of property andprivacy law as applied to the human body raise sev-eral challenges for the recognition of rights to geneticmaterials.42 In the context of property law, intellectualproperty rights in the body (e.g., a gene patent) receivemuch greater protection than tangible bodily prop-erty, which is treated as "raw material:' This disparityappears to be due to the association of individual laborand creative effort as the value that merits legal protec-tion, rather than the value of the raw materials them-selves (which may be considered "fungible" becausethey may be obtained from multiple donors). Sec-ondly, property law privileges utilitarian values (e.g.,economic efficiency, social utility) over other values(e.g., human dignity, autonomy, and equality), whichare relegated to the realm of privacy law, when appro-priate. Finally, property law prefers private propertyregimes to communal property regimes, and what iswithin the public domain is very contested.

In the context of privacy law, the challenges includethe manner in which boundaries are established tomaintain property claims versus privacy claims, andwhether the complaint is directed toward the frag-mentation of the body and extraction of genetic infor-mation, or toward the act of commercialization. Theexisting law demonstrates a fundamental disconnectbetween models for the protection of bodily property,such as genes and spleens, and models for protectionof intellectual property in the body, such as gene pat-ents and cell line patents.

It is quite clear that the property and privacy para-digms under domestic law are incapable of adequatelyaddressing the concerns of Native peoples over the useof bodily materials or genetic knowledge. Rather, wemust broaden the inquiry by recognizing the sovereignstatus of Native nations, including their right to main-tain their own laws and legal systems, and the positionof Native peoples as distinctive cultural groups whoare entitled to maintain their cultural integrity againstthe laws and policies of the dominant society. Thus,tribal law and international law should form alterna-tive frameworks to assess the concerns of Native peo-ples, as they are the cultural and political groups whoare most impacted by domestic U.S. law and policy.

II. Understanding Cultural Claims:The Legal Protection of Native Culturesand the Concept of Cultural HarmIn many cases, the challenges to biotechnology raisedby indigenous peoples have been lumped into a cat-egory of "cultural claims" that rests on some vagueconcept of "cultural rights:' The standard model used

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to evaluate cultural claims suggests that such rightsought to be adjudicated within pluralistic societiesaccording to a secular model of rights that respectsindividual claims to autonomy, equality, and liberty.In exceptional cases, theorists acknowledge that wemay need to recognize "special" rights for particulargroups to ensure their equal treatment in society. This,for example, is the argument that philosopher WillKymlicka makes in favor of recognizing special rightsfor particular groups under some circumstances andwhy he maintains that such recognition does not vio-late norms of equality and liberty for other citizens inpluralistic societies.43 However, Native peoples' "cul-tural claims" can only be fully understood by examin-ing the underlying rights claim, as well as the conceptof harm that generates the rights claim. This sectionof the article examines the concept of "cultural rights"and also "cultural harm."

A. The Significance of Cultural Rightsfor Indigenous PeoplesNative peoples often assert cultural rights as a way toassert a central claim for "cultural survival" The needfor cultural survival is particularly compelling forNative peoples, who have been subjected to nearly twocenturies of government laws and policies designedto destroy Native cultures and political systems andforcibly assimilate them into the dominant society.Of course, contemporary policymakers argue that theUnited States is now committed to "pluralism" andrespects basic civil rights, providing an appropriatebarrier to governmental overreaching. Native peoplesare not convinced, however, that the modern normsof "equal citizenship" or "liberty" will be used to pre-serve their cultural context. All too often, these normsmask policies that have severe and detrimental resultsfor Native peoples as distinctive cultural groups. Yetgroup rights (including cultural rights) are often per-ceived to be "dangerous" and antagonistic to liberalvalues.44

Existing theories justifying group rights often fail tocapture the distinctive concerns raised by Native peo-ples.45 For example, theorist Will Kymlicka argues thatcultural rights should be recognized when necessaryto preserve a secure "cultural context" for the mem-bers of particular groups. 46 This theory protects Nativepeoples against involuntary and forcible assimilation,but does not provide a positive right to protect Nativepeoples from cultural attrition or misuse of aspects ofthe group's culture by outside groups. Nor does thecommunitarian view - that human beings can developand exercise their distinctive human capacities onlythrough their participation in a "common life" -address the root problem for Native peoples as to why

their own culture and common life must be protected,even if they are offered equal rights to participate inthe culture and common life of the dominant society.It also does not address why this right is essential forNative people, but presumably not for the members ofimmigrant groups or other ethnic minorities.

Native peoples in the United States have rightsclaims that are different from those of any other groupand necessarily must be addressed under more inclu-sive theories. First, unlike any other group, NativeAmerican peoples are separate political as well as cul-tural groups. Native nations were involuntarily sub-sumed within contemporary civil society as sovereignpolitical units, designated under United States lawas "domestic, dependent nations," and thus, it is notalways appropriate to apply the "equal citizenship"norm to issues confronting Native peoples.47 In fact,Native Americans as a class are treated for purposesof equal protection jurisprudence as "political" ratherthan "racial" groups.48 Secondly, the barbarous historyof forcible assimilation that Native people have beensubjected to should lead to a different type ofjurispru-dential analysis for their contemporary cultural claims.When indigenous people across the globe argue for aright to "cultural survival," they are arguing for a collec-tive right, as groups, to protect and preserve their cul-tural practices, which have been attacked both directlyand indirectly by domestic policies focused on culturalassimilation and the appropriation of Native landsand resources. For Native people, the commitmentto cultural survival embodies a resistance to genocidethat is both physical and cultural. This commitmentto cultural survival has enabled Native nations to per-sist as distinctive cultural and political groups into thecontemporary era. Native peoples tend to see theircultures as encompassing systems of knowledge andunderstanding that are fundamental to the continua-tion of the tribe itself. Any harm to culture is perceivedas a direct harm to the ability of the tribe to continueinto the future.

B. The Concept of Cultural Rights withinInternational Human Rights LawTheorists Avishai Margalit and Moshe Halbertalmaintain that "human beings have a right to culture- not just any culture, but their own."49 "Culture" hasbeen defined as the "material, spiritual, and artisticexpression of a group that defines itself" as a distinctentity, both according to daily lived experience andaccording to practice and theory.50 For Margalit andHalbertal, the right to culture rests on a concept ofculture as "a comprehensive way of life" belonging toan "encompassing group, such as an ethnic, religious,or national group."51 International human rights law

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reflects this notion of cultural rights.52 For example,Article 27 of the International Covenant on Civil andPolitical Rights provides the following:

In those States in which ethnic, religious or lin-guistic minorities exist, persons belonging to suchminorities shall not be denied the right, in commu-nity with other members of their group, to enjoy

their culture, to profess and practice their own reli-gion, or to use their own languageY.5

The Draft Declaration on the Rights of IndigenousPeoples, which is being developed by a United NationsWorking Group, goes further and states that indig-enous peoples are entitled to the right of "self-deter-mination;' which ensures the autonomous self-expres-sion of the group within contemporary nation-statesin connection with their status as the "first nations" of

blocked or precluded. This obviously occurred duringthe last century when the federal government bannedthe practice of Native religions54 and required Nativechildren to attend boarding schools where they werepunished for speaking their languages or carrying ontheir traditions.5 It continues to occur in cases wherethe federal government allows land use developmentthat jeopardizes Native access to sacred sites on gov-ernment land or precludes groups from repatriatingNative American human remains that are culturallytied to contemporary groups within their own tradi-tions and belief systems. 56 A second sense in whichcultural harm arises is through cultural appropriation.In the most rudimentary sense, cultural appropria-tion occurs when one group asserts the right to con-trol aspects of another group's culture. For example,symbols, names, or rituals from one culture are takenby another culture and are assigned with a different

It is apparent that many Native groups find the existing regulatory frameworkinadequate to protect their rights, in part because it does not provide any

private right of action. Thus, many Native groups maintain an active distrustof biomedical researchers, particularly in light of the Havasupai Tribe's case.

that land. Thus, Native peoples have political and cul-tural rights in association with their distinctive statusand relationship with their traditional lands. More-over, because of their distinctive status and history ofdealings with the national governments, Native cul-tural rights are promoted as including both a "negativeright" to prevent the state from engaging in practicesthat would harm or destroy Native cultures, and alsoan affirmative right to require the state to support thegroup's way of life within existing state legal, social,and political institutions. Both rights are necessaryto allow the culture to "flourish" rather than merely to"exist."

Of course, an important part of this analysis is torecognize when actions by members of the dominantsociety - individuals, corporations, institutions, or thegovernment itself - harm Native cultures and thus,give rise to legal duties to protect Native cultures andrepair the harms that have been caused. The next sec-tion of this paper addresses the existing framework forevaluating claims of cultural harm.

C. The Concept ofCultural HarmThere are at least two different ways to view the con-cept of culturalharm. First, we can understand culturalharm to arise from situations in which Native peo-ples' access to their own cultural systems is somehow

meaning and significance. For example, a non-Indianentrepreneur may appropriate a sacred tribal symbolfor commercial use. The two categories can overlap incertain cases. For example, if an American museumphysically appropriates a sacred object from a tribe forpurposes of public display in its collection, then thisact both bars the tribe's access to its own culture aswell as constitutes a form of cultural appropriation inthe display of the "state's" history.

So, how are Native peoples' claims for cultural harmadjudicated within the contemporary legal system?And what are the limitations of existing legal theoriesto resolve "cultural conflicts"? Native claims for cul-tural harm have been litigated as harm to religion, tothe environment, to tangible property interests, and tointangible property interests, but none ofthese catego-ries sufficiently protects the multiple cultural interestsat stake. Many claims of cultural harm are assessed asclaims for religious freedom. Although the two catego-ries are related, they are not coextensive. A profoundconnection exists between Native culture and religionwhich makes it very difficult, if not impossible, to sep-arate the two concepts. Native culture is, in addition,closely related to the natural environment that is per-ceived, alternatively, to be the place of origin for thepeople, the source of their identity as a distinctive peo-ple, and the source of the Creator's law (natural law)

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that is intended to govern the people in their appro-priate interactions with the rest of the natural order.57This integration of values is perhaps best illustratedby Native peoples' "traditional ecological knowledge,"which constitutes the "culturally and spiritually basedway in which indigenous peoples relate to their eco-systems."51 For example, Ojibwa scholar and activistWinona LaDuke describes the traditional ecologicalknowledge of the Dene people of Canada as a "spiri-tually based moral code that governs the interactionbetween the human, natural and spiritual worlds."59Under such systems, Native people often considerthemselves to be "stewards" of the land with a set ofspiritual duties (e.g., annual renewal ceremonies) andphysical requirements (e.g., cultural constraints of theuse of a fish resource). Because of this complex inter-section of religion, culture, and environment, harmingany aspect of this way of life carries profound conse-quences for the cultural survival of Native people.

Unfortunately, these intersections are frequentlydisregarded by the dominant society's courts whenNative people seek protection for the lands and envi-ronments that are central to their cultures. Nativepeoples have brought a number of actions under theFree Exercise Clause of the First Amendment to pro-tect the integrity of sacred sites on federal lands fromdevelopment that would foreclose their religious prac-tice. These claims have largely been unsuccessful, par-ticularly after the Supreme Court's opinion in Lyngv. Northwest Indian Cemetery Protective Association,which held that the federal government's managementand development of its own "public" lands did notconstitute the type of coercive government behaviorthat would trigger the Free Exercise Clause, even if theundisputed effect of this development was to "virtuallydestroy" the religious practice of the Native people.60Nor has cultural harm been recognized as a legitimatebasis for awarding damages for the destruction of thenatural environments that support indigenous life-ways. For example, in the wake of the Exxon Valdezoil spill, Native people sought to recover damages forthe injury to their lands and resources.61 In particular,the Native claimants asserted that the spill had a dev-astating impact on their traditional subsistence wayof life, including the cultural and spiritual aspects ofthose lifeways, and sought damages for that non-eco-nomic harm. In the ensuing litigation, the Ninth Cir-cuit Court of Appeals affirmed the district court's rul-ing that cultural harm could not constitute a basis forthe recovery of non-economic damages under a publicnuisance claim.62 The Ninth Circuit Court of Appealsfound that the effects of the oil spill on the commu-nal and subsistence lifestyles of the Native peoplewere not appreciably different from the effects on all

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other rural Alaskan people.63 In the words of the dis-trict court, "[O]ne's culture - a person's way of life - isdeeply embedded in the mind and heart. Even cata-strophic cultural impacts cannot change what is in themind or in the heart unless we lose the will to pursue agiven way of life."64 Both court decisions are based onan assumption that culture is an "inner" state, ratherthan the basis for a right that merits protection andcompensation for loss. 65

Similarly, Euro-American concepts of property havebeen used to prevent Indian nations from enforcingtheir rights to tangible cultural objects, necessitatingthe enactment of federal legislation on the subject in1990. The Native American Graves Protection andRepatriation Act (NAGPRA) of 1990 defines Nativerights to four categories of cultural objects: ances-tral human remains, funerary objects, sacred objects,and objects of cultural patrimony.66 NAGPRA is thefirst statute to recognize Native legal rights to cul-tural objects and the first statute to recognize a groupentitlement to cultural property. The federal law reliesheavily on tribal law and tradition to establish the pro-tected nature of a given object.67 For example, the cat-egory of cultural patrimony under the statute includescultural items that have "ongoing historical, traditionalor cultural importance central to the tribe itself," suchthat they may not be alienated, appropriated or con-veyed by any individual tribal member.68 Tribal lawor custom is used to determine the legal question ofalienability at the time the item was transferred. NAG-PRA also covers sacred objects, which are defined as"specific ceremonial objects which are needed bytraditional Native American religious leaders for thepractice of traditional Native American religions bytheir present day adherents."69 The criteria used todefine these categories of cultural objects clearly high-light the vital role of indigenous beliefs (e.g., an intan-gible aspect of culture) in establishing rights to whatis considered a tangible cultural object. Significantly,many of the current problems under NAGPRA dealwith Native claims to ancient human remains, whichtriggers a conflict between the cultural value of ances-tral remains for contemporary Native peoples and thevalue of the human body as a source of knowledge orthe property of science. These claims are discussed inthe final section of the paper.

Notably, no current statute protects the intangiblecultural resources of Native peoples, including theexpressive aspects of culture, such as symbols, art,ceremonies, songs, and traditional knowledge. Theseare the aspects of culture that are most likely to beassociated with the concept of the "sacred;' which gen-erally is not accorded legal significance (apart fromsome recognized claim under the First Amendment)

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in American jurisprudence. In general, Anglo-Ameri-can property law segregates the religious aspect of acultural claim from the property aspect and handleseach claim under a disparate legal framework. Forexample, the Sioux Nation's claim to the Black Hills,as its cultural origin place and an important site forthe Nation's continuing need for cultural renewal, wasbifurcated into a free exercise case (that failed) anda property rights case (that succeeded because thefederal government was found to have "taken" treaty-guaranteed lands without paying "just compensa-tion").70 The relief ordered (monetary damages) wascommensurate with the property rights model, but didnot mitigate the cultural harm to the Lakota people.

Tribal interests in intangible cultural resources aregenerally evaluated under standard frameworks ofintellectual property law or federal Indian legislationbased on this framework, which respond to claims foreconomic harm but are devoid of notions of culturalharm. So, for example, under the federal Indian Artsand Crafts Act, 71 an individual tribal member or anIndian tribe has a cause of action to prevent a non-Indian from falsely marketing his or her creation as an"Indian product,' but no statute protects against theappropriation of tribal symbols by non-Indians or theproduction of rugs, baskets, or jewelry that are copiedfrom tribal designs, as long as they are appropriatelylabeled.

Similarly, the Lakota people, and specifically thedescendants of 19th-century tribal leader Crazy Horse,employed a variety of legal theories to challenge theHornell Brewing Company's use of Crazy Horse'sname to market a malt liquor product, all of whicheventually failed.72 Crazy Horse was well known forhis opposition to liquor and his steadfast adherenceto the traditional culture. The Lakota argued that theuse of Crazy Horse's name caused tangible harm to thetribe and its members by suggesting the association ofa venerated leader with alcohol, one of the worst evilsfor Native people since European contact. Moreover,the descendants of Crazy Horse argued that his namehad a particular significance under tribal law, that hisspirit was "alive" and could be harmed by the misuseof his name, and that his descendants had an obliga-tion to prevent this harm.73 In the first federal action,the court held that Congress could not issue statutoryprotection by prohibiting the use of Crazy Horse'sname to market liquor products because this violatedthe Hornell Brewing Company's First Amendmentright to engage in commercial speech.74 In the secondaction, the Eighth Circuit Court of Appeals held thatthe descendants of Crazy Horse could not maintain anaction against the Brewing Company in tribal courtbecause the tribal court lacked jurisdiction over the

defendant, who had not done business on the reserva-tion and did not market its products on the reserva-tion.75 Thus, no claim could redress the harm underfederal law, and there was no venue to address theclaim for cultural harm under tribal law because ofthese jurisdictional constraints.

II. Native Peoples and Genetic Research:Applying Concepts of Property, Privacy andCultural HarmGenetic research on Native peoples is problematic fora variety of reasons. Although many Native groupsare hopeful that genetic research can, in fact, provideimportant information about the causes of diseases(such as diabetes and certain cancers) that may befound disproportionately among particular Nativegroups, the costs of such research are often perceivedas outweighing any potential benefit. To some extent,informed consent requirements and human subjectsprotection regulations, including Institutional ReviewBoards (IRBs), are asserted to provide adequate pro-tection to donors.76 Without delving into the com-plexities of that issue, it is apparent that many Nativegroups find the existing regulatory framework inad-equate to protect their rights, in part because it doesnot provide any private right of action.7 Thus, manyNative groups maintain an active distrust of biomedi-cal researchers, particularly in light of the HavasupaiTribe's case.78

The concerns expressed by Native peoples canroughly be grouped into four categories. 79 First,Native groups seek to protect the integrity of bodilysubstances, such as blood, tissue, or embryos, againstpotential abuses that are perceived to directly affectthe donor and may also affect members of the donor'sfamily.80 This concern reflects a pervasive belief thatbodily substances continue to retain the essence of theindividual, even after removal from the body. Second,Native groups worry that the data secured from scien-tific study of these samples will be incorporated intounauthorized research and used to support theoriesthat are in conflict with traditional beliefs about theorigin and identity of the group. They point to cur-rent efforts by scientists to undertake DNA analysisof ancient human remains in connection with stud-ies about the origins of human populations."' This isalso an asserted interest of biomedical researchersdoing DNA testing of contemporary populations tomap the human genome and its diversity among dif-ferent groups., 2 Third, because many Native nationsare quite small (many have fewer than 1,000 membersand some fewer than 100 members), research data caneasily be tied to families and even individuals, posing

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a clear potential for breach of privacy rights even if thedonor is not identified by name.

Finally, Native groups worry that their tissue andDNA will be used to manufacture commercial prod-ucts that will provide economic benefit to researchers,and that they will have no right to share in this profit,83

given the existing case law, such as Moore v. Regents ofthe University of California14 and Greenberg v. MiamiChildren's Hospital.85 Such fears may relate to a fear ofeconomic exploitation, a fear of commodification of asacred resource (the human body and its componentparts), or some combination of these fears. In any case,these suspicions are situated within a historical con-text of European exploitation ofNative peoples and appropriationof Native resources. The discov- If the availaery doctrine of medieval Europe are interculwas used to assert that the landsin the New World were vacant and cooperativeavailable for ownership by the first would be p(Christian nation to settle these and Nativelands, and this doctrine becamethe basis for the United States' have an int(sovereign right to extinguish the to evaluateNative peoples' "right of occu-pancy."8 6 Native peoples fear thattheir genetic resources are the new "common prop-erty" that researchers are laying claim to. In addition,traditional narratives that place indigenous peoples asthe first occupants of these lands may be challengedby researchers, who assert that the DNA of the land'sancient inhabitants is not the same as that of contem-porary groups.8 7

How can we address these concerns in the contem-porary era? First, we must examine existing cases deal-ing with Native peoples' rights to the body, which haveprimarily arisen in the context of NAGPRA claims.These cases illustrate how the frameworks of property,privacy, and intellectual property rights operate todeny Native claims for cultural harm. And second, wemust evaluate the possibility of an intercultural legaland ethical framework to address these concerns.

A. The "Grey Zone"ofNAGPRA: Cultural Harm andHuman BodiesOne of the most relevant cases asserting culturalharm based on the mistreatment of Native bodiesis Na Iwi 0 Na Kupuna 0 Mokapu v. Dalton,88 inwhich a Native Hawaiian group sought to protect itsancestral human remains from scientific study anddocumentation pursuant to NAGPRA's inventoryrequirement. In that case, the Department of Navyhad disinterred hundreds of Native human remainsduring its construction many years earlier of a facil-

ity on the Mokapu Peninsula. The remains weredisarticulated and housed by the agency in largecrates until NAGPRA was passed in 1990. NAGPRArequired any federal agency in custody of NativeAmerican human remains to produce inventoriesof the remains that identified their number, theirtribal affiliation if known, the place of acquisition,and any other information that would allow linealdescendants and affiliated tribes to make a claim.Hui Malama, a Native Hawaiian organization withstanding under NAGPRA, entered into a consulta-tion with the Department of Defense in the courseof this process. 89 The remains were given to the cus-

Sble legal and ethical frameworkstural in nature, this might inspirerelationships and partnerships that

erceived to mutually benefit researcherscommunities. What would it mean to-rcultural legal and ethical frameworkthese issues?

tody of the Bishop Museum to prepare an inventorythat would accurately list all sets of human remainsand funerary objects taken from the Mokapu Penin-sula. The museum argued that it was impossible toprepare an inventory without scientific examinationof the remains in order to document their age, sex,skeletal completeness, and pathologies. However,the museum ultimately prepared an inventory thatreported this information and consisted of the narra-tive report and appendices, including photographs ofthe remains and the results of scientific analysis.90

Hui Malama then brought suit against the federalgovernment and the Bishop Museum in its capacityas guardian for the Na Iwi remains for various allegedviolations of federal law and the rights of the remains.91Hui Malama asserted that the federal defendants hadviolated NAGPRA by undertaking scientific researchon the remains (the statute allows scientific study ofNative American remains only when necessary to fin-ish a significant study that was already in progresswhen the statute became effective but bars any newstudy of remains without the consent of the affiliatedtribes). The organization also claimed that the releaseof this data to third parties would cause a profoundand serious harm to the remains (which were assertedto have an essence as living beings) and their descen-dants (whose interests were being advanced directlyby Hui Malama). The organization's complaint even

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listed the Na Iwi remains as plaintiffs in their ownright, asserting that "according to Hawaiian custom,human remains are spiritual beings that possess allof the traits of a living person" and that the remainshad "suffered an injury to their spiritual well-being"that must be the subject of legal redress.92 In addition,Hui Malama asserted that "both spiritual and physicalharm" had resulted to living members of Hui Malamafrom the actions of the federal defendant."93 Accordingto the leaders of Hui Malama:

By accepting a sacred covenant under Hawaiiantradition and custom to care for the disinterredremains, harm will allegedly befall members whofail to protect and care for or who permit the des-ecration of the remains. Members allege that theyalso suffer emotional trauma as a result of publica-tion of the inventory report, and fear for the physi-cal and spiritual safety of themselves and theirfamilies .94

The court purported to express "respect for these per-sonal beliefs,"95 but ruled against all of the claims forredress of cultural harm in this litigation.96 The courtfirst held that the remains did not have independentlegal standing as plaintiffs97 even though Hui Malamahad pointed to cases finding that non-human entitiessuch as corporations and ships had legal standing insupport of their claim. However, the court said thatit could not find any case law addressing the issue ofwhether human remains have legal standing at com-mon law, nor had Hui Malama demonstrated thatsome tangible benefit to living members of societywould result from the grant of such standing (findingthat the policy basis of allowing standing to corpora-tions and ships served the public interest in "businessand commerce").91

The court found that Hui Malama had standingas a plaintiff group, who were comprised of livingmembers of a cultural group claiming descent fromthe remains. However, the court found that the sci-entific study of the remains was permissible becausethe intent of the federal defendant was to affiliate theremains through the inventory process and not purelyto gain knowledge from undertaking a scientific studyof the remains. 99 Moreover, the court found that theFreedom of Information Act (FOIA) mandated the dis-closure of the data to any interested third party sincethe federal government generated and controlled thisinformation, and the duty of the agency was to disclosesuch information so long as no statutory exemptionapplied.100 In particular, Hui Malama argued that theinformation could be withheld under FOIA pursuantto exemption three, which covers materials exempted

by other ("withholding") statutes, and exemption six,which excludes materials such as personnel and medi-cal files, which, if released, would constitute a "clearlyunwarranted invasion of personal privacy."101 Thecourt spent very little time in finding that NAGPRAwas not a "withholding" statute and then moved on tothe discussion of invasion of privacy. According to thecourt, this exemption was intended to protect infor-mation regarding "particular (e.g., identifiable) liv-ing persons" by preventing the disclosure of personalinformation, such as that found in personnel recordsand medical records.102 In this case, the informationwas gained from the study of deceased individuals,and thus, "there is no reasonable fear that any individ-ual with a legally cognizable privacy interest" wouldbe affected by disclosure of the inventory.103 Nor didthe court find that its equitable powers were required,since Hui Malama had "failed to legally substantiateits claim that dire results will ensue from permittingdisclosure of the inventory."104 In short, the Na Iwicase demonstrates the standard bias against invokingprivacy claims on behalf of any claimant other than aliving individual.

Another recent NAGPRA case, Bonnichsen v. UnitedStates, tested out the claims of five claimant tribesthat they were culturally affiliated to a set of ancienthuman remains excavated on federal land within thetraditional joint use area of the tribes.105 The NinthCircuit Court of Appeals found that human remains ofthis age (approximately 8,000-9,000 years old) couldnot be considered Native American for purposes ofNAGPRA without a way to prove that a person thisancient shared any cultural or genetic similarity withcontemporary Native Americans.10 6 Instead, the courtdrew on narratives of discovery and conquest, find-ing that the skeleton was "one of the most importantAmerican anthropological and archaeological discov-eries of the late twentieth century" and thus, should bemade available for study by scientists.107

In the Bonnichsen case, the court specificallydenounced tribal narratives as a method to prove thetype of cultural connection between ancient and mod-ern Native Americans that would trigger NAGPRA.The court disregarded NAGPRA:s statutory require-ment that accords oral history and tribal narrativethe same evidentiary weight as scientific data in theassessment of cultural affiliation, finding that thepreliminary cultural connection requirement did notencompass the same standard. The court maintainedthe following:

Because Kennewick Man's remains are so old andthe information about his era is so limited, therecord does not permit the Secretary to conclude

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reasonably that Kennewick Man shares specialand significant genetic or cultural features withpresently existing indigenous tribes, people, orcultures.10o

The result of this opinion ultimately held that the skel-eton of this ancient Native person was federal prop-erty available for scientific study. The court omittedany discussion of cultural values or cultural harm.Tribal leaders had testified that ancestral remains helda paramount spiritual significance for the Native peo-ple of this region based on an ethical principle associ-ated with the sanctity of life and death. This sacredlaw establishes how human beings relate to each otherin the human and spirit world. If something is dis-turbed, then everything else suffers. Adhering to thetraditional ways of life ensures the continuity of theworld. Upon death, the essence of life dissipates, butstill pervades the remains. Thus, holding that humanremains are property and can be subjected to an indef-inite series of invasive and destructive tests is per-ceived as a cause of harm to Native people, whetherunderstood as a tangible harm (i.e., depriving Nativepeople of access to ancestral remains) or an intangibleharm (i.e., doing things to the remains that injure theiressence and misdirect the "power" or "agency" associ-ated with them).

As these cases illustrate, the legal categories of prop-erty rights and privacy rights inadequately address theclaims being expressed by Native people with respectto human remains, bodily materials, and the intangi-ble components associated with study or research thatgenerates information and knowledge about theseremains and materials. These legal categories arenot capable of redressing the claims for harm beingadvanced by indigenous groups.

B. Structuring an Alternative Framework Based onIntercultural JusticeIt is clear that the standard legal theories and legalvenues inadequately address Native peoples' claims,which has inspired certain Native nations to considerissuing a moratorium on genetic research on the tribeor its members that is not specifically requested andcontrolled by the Nation itself. Native nations pos-sess sovereignty over their lands and members andcan exercise the right to exclude non-members fromtrust lands.109 Native nations can enter contracts withresearchers, asking for adherence to tribal standards asa condition of the research agreement. These contractsare legally binding, although the risk of breach and theattendant limitations on potential remedies may be afactor here. To the extent that the breach results inactions that occur off the reservation and involve non-

members (e.g., sharing samples with researchers at adifferent institution), the Native nation might haveto rely on non-tribal judicial institutions to secureadequate relief. Moreover, if the researchers approachindividual tribal members living off the reservation,then the tribe's jurisdiction may not be sufficient tobar an independent agreement between the individualand the researcher.

However, if the available legal and ethical frame-works are intercultural in nature, this might inspirecooperative relationships and partnerships thatwould be perceived to mutually benefit research-ers and Native communities. What would it mean tohave an intercultural legal and ethical framework toevaluate these issues? First, it would require an openacknowledgment that the existing legal frameworksinadequately protect Native peoples from the types ofharm they undergo (e.g., unauthorized use of geneticresources); it would also require a commitment todevelop frameworks that can achieve justice. The con-cept of "intercultural justice" is a means of restructur-ing the legal relationships among Native nations andthe United States and its non-Indian citizens to alle-viate the historical and contemporary grievances andharms that continue to affect Native communities.A10In relation to Native rights to genetic resources, themain question is who has the power to decide whatNative peoples' rights to genetic resources entail. Thisquestion has at least three components: (1) What arethe institutional frameworks for decision-making? (2)What is the ability of those institutions to incorporatethe relevant values and norms of the affected groups?and (3) What is the ability of our society to generatenew and different theories of law that respond to cul-tural concerns and also to the challenges of new tech-nologies and emergent issues?

The jurisdictional considerations involved in casessuch as those of the Havasupai Tribe means that themajority of these conflicts will be decided by the stateor federal courts. These courts will apply state and fed-eral law to the issue, which in most cases, means thatthe tribe's claim for cultural harm will be disregarded.Moreover, other institutions (such as universities andhospitals) will have IRBs that reflect the dominantsociety's approach to biomedical research and humansubjects protection. In the context of Native peoples'rights to genetic resources, there is a need for collabo-ration with tribal court systems and the developmentof tribal IRBs, which can contribute tribal values andnorms for application to these cases. Tribal law has thecapacity to generate a distinctive moral and ethicalframework in order to determine how human mate-rials and human beings ought to be treated. More-over, in resolving disputes, tribal courts often employ

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norms dealing with restorative justice. Thus, rightsclaims may therefore be adjudicated under a differ-ent set of norms than would apply in federal court.For example, norms of equal respect, group solidarity,good relations, and compatibility with "natural" (i.e.,universal) principles may be used to understand andprovide redress for cultural harm.

Native peoples are quite concerned with the ethi-cal boundaries of research, given their understandingof fundamental norms that guide human interactionswith the natural world. The continuing perceptionthat a "battle" exists between Western science andNative religion masks a fundamental difference inthe metaphysics that structures Western and Nativecultural traditions. As Vine Deloria and Daniel Wild-cat have noted, Western metaphysics largely reflects a"mechanical" and "reductionist" understanding of theUniverse, and one which focuses on the "tangible" qual-ity of "matter.""' Under this view, scientists dissect thenatural world into core elements, which then providea platform of knowledge that can be applied to manydifferent things. For example, the study of genetics islargely a study of the chemical and biological compo-nents of living entities, and the human body itself canbe "mapped" (i.e., the genome). Thus, by understand-ing the components of the body as a machine, one canthen understand the machine.

In comparison, Native metaphysics comprises a setof first principles which must be understood in orderto make sense of the world. Many Native cultures seethe world and all of its possible experiences as form-ing a "fabric of life," in which every aspect is depen-dent and related to all other aspects. There are twobasic experiential dimensions, located in place and inpower (i.e., the spiritual essence of the life force of thenatural world). Each living thing has its own essenceand personality and its own place within the naturalworld. If human beings understand this first prin-ciple, then they can order their conduct accordingly.In this view, the intangible components of thoughtare quite important. If humans can understand thenature or psychological characteristics of the Uni-verse, then they can then describe the morphologi-cal structure of the Universe. Human experience isobviously important to this understanding, as is anappreciation that the relevant ethical system appreci-ates the relational, reciprocal nature of the universe,sees all aspects as imbued with power and agency, andunderstands the interconnections of humans to therest of the Universe.

Because ofthis different metaphysical structure, sci-entific technology such as cloning, stem cell research,and cell line manufacture likely will inspire a differentset of reactions from Native peoples as to the overall

effect and consequence of this research. Similarly,the use or misuse of human tissue, hair, and blood,raises serious concern among Native peoples, as doesthe mistreatment of human bodies, body parts, andhuman remains. If the United States is truly com-mitted to a pluralistic and multicultural democracy,then it must incorporate intercultural systems of eth-ics into its national decision-making, which will seta standard that can also be implemented at the statelevel. Opponents will likely cite the multiplicity ofcultures within the United States as a reason to fore-close such expansion in national policy. However, thisarticle takes the position that intercultural justice isa necessity for Native nations because of their politi-cal status as sovereigns. The rights of Native nationsare not purely the rights of cultural or ethnic groups.Rather, they are separate sovereigns with the rightto self-determination as peoples within the domesticfederal system.

ConclusionIn Ethics for the New Millenium, the Dalai Lamacalls upon all peoples, cultures, and faith traditionsto engage the inquiry of what is the appropriate rela-tionship between individual and societal ethics.112He encourages us to look for universal points of con-nection, including, for example, the need to promotehuman happiness and well-being, as well as com-passion and tolerance. He suggests that in order forthis to occur, we should be committed to recogniz-ing several spiritual (not religious) values, includingrestraint (self-discipline) and virtue (cultivating innerstrength and resilience). Is that the enterprise that weas citizens of the United States are committed to at anational level? At an international level? Probably not.At the national level, we tend to rely on the Constitu-tion and Bill of Rights to ensure that our conduct isappropriate. At an international level, we feign com-mitment to a universal set of human rights, yet rou-tinely the United States declines to actually sign ontohuman rights conventions, let alone bind itself to anyenforceable guarantees.

Biotechnology is a high stakes game. Researchersare playing with the fundamental structure of the nat-ural world, and the consequences are as yet unknown.Is the benefit worth the risk? How can we possiblyadjudicate that question under our standard economicmodel, informed only by the basic constraints of ourConstitution? These questions must be evaluatedusing an intercultural normative framework, in whichequal respect is given to all peoples who will suffer theconsequences of these innovations. Genetic researchon Native peoples must be evaluated under a frame-work that is inclusive of Native norms and values.

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unavailable... [TIhe plaintiffs must find recompense for inter-ference with their culture from the public recoveries that havebeen demanded of and received from Exxon.")

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that 1877 federal statute extinguished tribal treaty rights to theBlack Hills without payment of just compensation in violation

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Rebecca Tsosie

of the Fifth Amendment); ef. Crow v. Gullet (D.S.D.) (Nativeclaimants not protected by the First Amendment in effortsto protect the integrity of Bear Butte, a sacred site within theBlack Hills).

71. 25 U.S.C. 305-305(e) and amendments.72. These claims were brought in federal court and in tribal court

under different legal theories. For an excellent summary of thelitigation, see N. Jessup Newton, "Memory and Misrepresen-tation: Representing Crazy Horse in Tribal Court," in Ziff andRao, supra note 50; J. R. Herrera, "Not Even His Name: Isthe Denigration of Crazy Horse Custer's Final Revenge?" Har-vard Civil Rights-Civil Liberties Law Review 29, no. 1 (1994):175-195.

73. Id. (Herrera), at 186-87.74. Hornell Brewing Co. v. Brady, 819 F. Supp. 1227 (E.D.N.Y.

1993).75. Hornell Brewing Co. v. Rosebud Sioux Tribal Court, 133 F.3d

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77. See National Research Act, 42 USC § 289 and regulations cod-ified at 34 CFR 46 (human subjects protections for federallyfunded research).

78. See Summary Meeting Report, American Indian and AlaskaNative Genetics Research Policy Formulation Meeting, Febru-ary 7-9, 2001, at 5. (The meeting was funded by the NationalInstitute of General Medical Sciences and National GenomeResearch Institute.)

79. See D. Harry, S. Howard, B. L. Shelton, and the IndigenousPeoples Council on Biocolonialism (IPCB), "Indigenous Peo-ples, Genes and Genetics: What Indigenous People ShouldKnow about Biocolonialism," IPCB, May 2000, at 19-23; id;American Indian Law Center, Inc., Model TribalResearch Code,3rd ed., September 1999, at 1-2.

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(D. Haw. 1995).89. 894 F. Supp., at 1403.90. Id., at 1402-03.91. Id., at 1403-04.92. Id., at 1406.93. Id., at 140994. Id., at 1409, n. 9.95. Id.96. Id., at 1418.97. Id., at 1408.98. Id., at 1407.99. Id., at 1415-17.100. Id., at 1410-14.101. Id., at 1411-13.102. Id., at 1413.103. Id.104. Id., at 1414.105. Bonniehsen v. United States, 357 F.3d 962 (9th Cir. 2004).106. 357 F. 3d, at 979-80.107. Id., at 966, 979.108. Id., at 979.109. See generally Clinton, Goldberg, Tsosie, supra note 55.110. See, e.g., R. Tsosie, "Sacred Obligations: Intercultural Justice

and the Discourse of Treaty Rights," University of Californiaat Los Angeles Law Review 47, no. 6 (2000): 1615-72,.

111. V. Deloria, Jr. and D. R. Wildcat, Power and Place: Indian Edu-cation in America (Golden, CO: Fulcrum Publishing, 2001).

112. His Holiness the Dalai Lama, Ethics for the New Millennium(New York: Riverhead Books, 1999).

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TITLE: Cultural Challenges to Biotechnology: Native AmericanGenetic Resources and the Concept of Cultural Harm

SOURCE: J Law Med Ethics 35 no3 Fall 2007

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