Awi Mona

1011023The Havasupai Case In 1989, two tribal members approached an ASU faculty member, asking for help to stem the tribes high incidence of diabetes. They allege that researcher Therese Markow and a colleague originally presented their project to the tribal council as consisting of three elements: (1) diabetes education, (2) collecting and testing blood samples from individual members to identify diabetics or persons susceptible to diabetes, and (3) genetic testing to identify an association between certain gene variants and diabetes among Havasupai people.Complaint in the federal court Breach of fiduciary duty and lack of informed consent (including not having appropriate procedures for vulnerable subjects such as children, people with mental illness, and people whose main language was the tribal language)Fraud and misrepresentation/fraudulent concealmentIntentional or negligent infliction of emotional distress ConversionViolation of civil rightsNegligence, gross negligence and negligence per seSecond Amended Complaint Breach of confidential or fiduciary duty (including lack of informed consent)Fraud and misrepresentation/fraudulent concealmentNegligence, gross negligence, negligence per seTrespass (with respect to the blood samples and entry onto tribal lands)FactualSome of the papers generated from the blood samples dealt with schizophrenia, inbreeding and theories about ancient human population migrations from Asia to North America.The latter body of work is contrary to the Havasupai belief that, as a people, they originated in the Grand Canyon.Notices of ClaimASUs actions have invaded the personal privacy of Havasupai tribal members and the cultural and religious privacy of the Havasupai Tribe.The misuse of the claimants blood samples constituted a betrayal of trust with the Havasupai people and a violation of the original agreement and a violation of the claimants privacy rights as well as their cultural, religious, and legal rightsSettlement On April 20, 2010, ASU agreed to pay $700,000 to 41 members of the Havasupai Indian tribe to settle legal claims that university researchers improperly used tribe members blood samples in genetic research.2010 DNA Property Law: The Basic Structure Applicable to Tangible ResourcesWesternized intellectual property law provides a poor fit for indigenous peoples concerns about protecting intangible cultural resources, in part because the suppositions about knowledge are culturally quite different for Native peoples.Cultural ChallengesLegal protection of indigenous cultures & the concept of cultural harmCulture: material, spiritual, and artistic expression of a group that defines itself as a distinct entity, both according to daily lived experience and according to practice and theory.J. Hart, Translating and Resting Empire: Cultural Appropriation and Postcolonial Studies, in B. Ziff and P. V. Rao, eds., Borrowed Power: Essays on Cultural Appropriation (New Brunswick, NJ: Rutgers University Press, 1997): at 137-8.Understanding Cultural ClaimsRight to culturebased on a concept of culture as a comprehensive way of life belonging to an encompassing group, such as an ethnic, religious, or national group.A. Margalit and M. Halbertal, Liberalism and the Right to Culture, Social Research 61, no. 3 (1994): 497-98.The Havasupai Case Applying Concepts of Property, Privacy and Cultural HarmBrief Background

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research involving human subjectsTitle45, Code of Federal Regulations part 4645 CFR 46Belmont Report1979respect for person, beneficence, justice

IHSIndian Health ServiceIHSIRB IHS IRB IHSIRB The Portland Area IHS Guidelines for ResearchersWorking with Tribes and IHSIRB IRBModel Tribe Research Codecompiled & edited by American Indian Law CenterUniversity of ArizonaIRB Native Peoples Technical Assistance OfficeTribal Research Codes, Ordinances and ProtocolsTri-Council Policy Statement (TCPS): Ethical Conduct for Research Involving HumansCanadian Institutes of Health ResearchCIHRNatural Sciences and Engineering Research Council of CanadaNSERCSocial Sciences and Humanities Research Council of CanadaSSHRCTCPS , edition I, 1998: Good Practicescommunity consultationCHIR Guidelines for Health research Involving Aboriginal Peoples2007jurisdictionTCPS 22010Chapter 9: Research Involving The First Nations, Inuit and Mtis Peoples of CanadaIntroductionKey Concepts and Definitions Interpreting the Ethics Framework in Aboriginal ContextsApplying Provisions of This Policy in Aboriginal ContextsdataUnderstanding Cultural ClaimsApplying Concepts of Property, Privacy and Cultural HarmJanke Terri, Our culture: Our Future Report on Australian Indigenous cultural and intellectual property rights, Michael Frankel and Company, written and published under commission by the Australian Institute of Aboriginal and Torres Strait Islander Studies and the Aboriginal and Torres Strait Islander Commission, Sydney 1999.