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Cultural Challenges to Biotechnology: Native American Genetic Resources and the Concept of Cultural Harm

Published online by Cambridge University Press:  01 January 2021

Rebecca Tsosie
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Extract

Our society currently faces many complex and perplexing 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. Scientists 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 scientists because “the relative isolation of the communities 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 members 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 researchers 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. Consequently, the affected members sued for damages under several legal theories. 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.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 35 , Issue 3 , Fall 2007 , pp. 396 - 411
Copyright
Copyright © American Society of Law, Medicine and Ethics 2007

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References

Wu, A. O., “Surpassing The Material: The Human Rights Implications of Informed Consent in Bioprospecting Cells Derived from Indigenous People Groups,” Washington University Law Quarterly 78, no. 3 (2000): 979–1003, at 983–84.Google Scholar
Tilousi et al. v. AZ State University et al. (CV2004–0115, AZ Superior Ct., Coconino County); Havasupai Tribe v. AZ State University et al. (CV 2004–0146, ZA Superior Ct. Coconino County).Google Scholar
Id. (Tilousi compliant), at 7; id. (Havasupai Tribe complaint), at 6.Google Scholar
See, e.g., Moore v. Regents of the University of California, 793 P.2d 479 (Cal. 1990), cert. denied, 499 U.S. 936 (1991).Google Scholar
See generally Rao, R., “Property, Privacy, and the Human Body,” Boston University Law Review 80, no. 2 (2000): 359–460.Google Scholar
See generally Korngold, G. and Morriss, A. P., eds., Property Stories (New York: Foundation Press 2004): 1–2.Google Scholar
Id., at 1.Google Scholar
Posner, R. A., Economic Analysis of Law, 6th ed. (New York: Aspen Law and Business, 2003): 31–91.Google Scholar
Id., at 31–91. See, e.g., at 32 (all resources should be owned by someone), at 34–36 (exclusivity as value, developing this point further in subsequent text), and at 75 (transferability).Google Scholar
Demsetz, H., “Toward a Theory of Property Rights,” American Economic Review 57, no. 2, Papers and Proceedings of the 79th Annual Meeting of the American Economic Association (1967): 347–59.Google Scholar
See, e.g., Chilkat Indian Village, IRA v. Johnson, 20 Indian L. Rep. 6127 (Chilkat Tr. Ct. 1993) (explaining the concept of “clan trust property,” which is under the stewardship of particular tribal members, but cannot be alienated to nonmembers).Google Scholar
Clinton, R. N., “The Rights of Indigenous Peoples as Collective Group Rights,” Arizona Law Review 32, no. 4 (1990): 739–744, at 740.Google Scholar
Id., at 740.Google Scholar
Id., at 742.Google Scholar
Id.Google Scholar
Id.Google Scholar
Id.Google Scholar
See Hardin, G., “The Tragedy of the Commons,” Science 162, no. 3859 (December 13, 1968): 1243–48.Google Scholar
U.S. Const. art. 1, § 8 (ratified 1789).Google Scholar
International News Service v. Associated Press, 248 U.S. 215 (1918).Google Scholar
Tsosie, R., “Reclaiming Native Stories: An Essay on Cultural Appropriation and Cultural Rights,” Arizona State Law Journal 34, no. 1 (2002): 299–358, at 311–13.Google Scholar
See generally Trigger, B., “The Past as Power: Anthropology and the North American Indian,” in McBryde, I., Who Owns the Past? (Melbourne/Oxford: Oxford University Press, 1985): 11–40; see also id.Google Scholar
See Tsosie, , supra note 21.Google Scholar
See Rao, , supra note 5, at 444–45.Google Scholar
Id., at 389.Google Scholar
Id.Google Scholar
Id.Google Scholar
Id., at 402.Google Scholar
Florida v. Powell, 497 So.2d 1188 (Fla. 1986).Google Scholar
See Rao, , supra note 5, at 402–3.Google Scholar
Id., at 384–87.Google Scholar
Brotherton v. Cleveland, 923 F.2d 477 (6th Cir. 1991).Google Scholar
See Rao, , supra note 5, at 406.Google Scholar
Id., citing Brotherton v. Cleveland, 923 F. 2d, at 481.Google Scholar
Id., at 428.Google Scholar
See Moore, , supra note 4.Google Scholar
See Rao, , supra note 5, at 433.Google Scholar
Id., at 440.Google Scholar
Id.Google Scholar
Id., at 442–43.Google Scholar
Id., at 441.Google Scholar
See Rao, R., “Genes and Spleens: Property, Contract, or Privacy Rights in the Human Body,” Journal of Law, Medicine & Ethics 35, no. 3 (2007): 371–382.CrossRefGoogle Scholar
See, e.g., Kymlicka, W., Multicultural Citizenship: A Liberal Theory of Minority Rights (New York: Oxford University Press, 1995).Google Scholar
Tsosie, R., “American Indian and the Politics of Recognition: Soifer on Law, Pluralism, and Group Identity,” Law and Social Inquiry 22, no. 2 (Spring 1997): 359–388, at 377.CrossRefGoogle Scholar
See Tsosie, , supra note 21, at 332–46.Google Scholar
Kymlicka, W., Liberalism, Community, and Culture (New York: Oxford University Press, 1989): at 169.Google Scholar
The status of Indian nations as “domestic, dependent nations” emerged from Chief Justice John Marshall's opinions in the Cherokee cases. See Cherokee Nation v. Georgia, 30 U.S. (5 Pet.) 1 (1831); Worcester v. Georgia, 31 U.S. (6 Pet.) 515 (1832).Google Scholar
See Morton v. Mancari, 417 U.S. 535 (1974).Google Scholar
Margalit, A. and Halbertal, M., “Liberalism and the Right to Culture,” Social Research 61, no. 3 (1994): 491–510.Google Scholar
Hart, J., “Translating and Resting Empire: Cultural Appropriation and Postcolonial Studies,” in Ziff, B. and Rao, P. V., eds., Borrowed Power: Essays on Cultural Appropriation (New Brunswick, NJ: Rutgers University Press, 1997): at 137–8.Google Scholar
See Margalit, and Halbertal, , supra note 49, at 497–98.Google Scholar
See generally Anaya, S. J., Indigenous Peoples in International Law, 2nd ed. (New York: Oxford University Press, 2004). (Appendix contains relevant provisions of documents cited in this article.)Google Scholar
Id., at 132. For the full text, please see, Office of the High Commissioner of Human Rights, International Covenant on Civil and Political Rights, General Assembly Resolution 2200A (XXI), article 27, 999 U.N.T.S. 171, December 16, 1966 (entered into force March 23, 1976).Google Scholar
See Vecsey, C., ed., Handbook of American Indian Religious Freedom (New York: Crossroad Press, 1991): at 16.Google Scholar
Clinton, R. N., Goldberg, C. E. and Tsosie, R., American Indian Law: Native Nations and the Federal System, Cases and Materials, 5th ed. (LexisNexis/Mathew Bender, 2007): at 35–6.Google Scholar
See, e.g., Moore, S. C., “Sacred Sites and Public Lands,” in Vecsey, C., Handbook of American Indian Religious Freedom (New York: Crossroad Press, 1991): at 81–99.Google Scholar
See Tsosie, R., “Tribal Environmental Policy in an Era of Self-Determination: The Role of Ethics, Economics, and Traditional Ecological Knowledge,” Vermont Law Review 21, no. 1 (1996): 225–333, at 225.Google Scholar
Id., at 288–89.Google Scholar
Id.Google Scholar
Lyng v. Northwest Indian Cemetery Protective Association, 485 U.S. 439 (1988).Google Scholar
In re Exxon Valdez, 1994 W.L. 182856 (D. Alaska), 1995 A. M.C. 1440 (D. Alaska, 1994); affirmed 104 F.2d 1196 (9th Cir. 19997)Google Scholar
In re Exxon Valdez, 1994 W.L. 182856 (D. Alaska), 1995 A.M.C. 1440; In re Exxon Valdez: Alaska Native Class v. Exxon Corp., 104 F. 3d 1196 CA9 (Alaska) 1997.Google Scholar
104 F. 2d at 1198.Google Scholar
1994 W.L. 182856 at *4.Google Scholar
See 1994 W.L. 182856 at *5 (“enjoyment of life damages are unavailable…[T]he plaintiffs must find recompense for interference with their culture from the public recoveries that have been demanded of and received from Exxon.”)Google Scholar
Native American Graves Protection and Repatriation Act, 25 U.S.C. 3001–3013.Google Scholar
See Trope, J. F. and Echo-Hawk, W. R., “The Native American Graves Protection and Repatriation Act: Background and Legislative History,” Arizona State Law Journal 24, no. 1 (Spring 1992): 35–77, at 66.Google Scholar
25 USC § 3001 (3) (D).Google Scholar
25 USC § 3001 (3) (C).Google Scholar
See United States v. Sioux Nation, 448 U.S. 371 (1980) (holding that 1877 federal statute extinguished tribal treaty rights to the Black Hills without payment of just compensation in violation of the Fifth Amendment); cf. Crow v. Gullet (D.S.D.) (Native claimants not protected by the First Amendment in efforts to protect the integrity of Bear Butte, a sacred site within the Black Hills).Google Scholar
25 U.S.C. 305–305(e) and amendments.Google Scholar
These claims were brought in federal court and in tribal court under different legal theories. For an excellent summary of the litigation, see Jessup Newton, N., “Memory and Misrepresentation: Representing Crazy Horse in Tribal Court,” in Ziff, and Rao, , supra note 50; Herrera, J. R., “Not Even His Name: Is the Denigration of Crazy Horse Custer's Final Revenge?” Harvard Civil Rights-Civil Liberties Law Review 29, no. 1 (1994): 175–195.Google Scholar
Id. (Herrera), at 186–87.Google Scholar
Hornell Brewing Co. v. Brady, 819 F. Supp. 1227 (E.D.N.Y. 1993).Google Scholar
Hornell Brewing Co. v. Rosebud Sioux Tribal Court, 133 F.3d 1087, 1093–94 (8th Cir. 1998).Google Scholar
See McGregor, J., “Research Ethics for Genetic Research on Groups,” Journal of Law, Medicine & Ethics 35, no. 3 (2007): 356–370.Google Scholar
See National Research Act, 42 USC § 289 and regulations codified at 34 CFR 46 (human subjects protections for federally funded research).Google Scholar
See Summary Meeting Report, American Indian and Alaska Native Genetics Research Policy Formulation Meeting, February 7–9, 2001, at 5. (The meeting was funded by the National Institute of General Medical Sciences and National Genome Research Institute.)Google Scholar
See D. Harry, S. Howard, B. L. Shelton, and the Indigenous Peoples Council on Biocolonialism (IPCB), “Indigenous Peoples, Genes and Genetics: What Indigenous People Should Know about Biocolonialism,” IPCB, May 2000, at 19–23; id; American Indian Law Center, Inc., Model Tribal Research Code, 3rd ed., September 1999, at 1–2.Google Scholar
Bowekaty, M. B., “Perspective on Research in American Indian Communities,” Jurimetrics 42 (Winter 2002): 145–48, at 147–48.Google Scholar
See Havasupai Tribe complaint, supra note 2.Google Scholar
See TallBear, K., “Narratives of Race and Indigeneity in the Genographic Project,” Journal of Law, Medicine & Ethics 35, no. 3 (2007): 412–424.CrossRefGoogle Scholar
See Whelan, M. L., “What, If Any, Are the Ethical Obligations of the U.S. Patent Office? A Close Look at the Biological Sampling of Indigenous Groups,” Duke Law and Technology Review, no. 14 (2006): at 5.Google Scholar
See TallBear, , supra note 82; Moore v. Regents of University of California, 793 P.2d 479 (Cal. 1990).Google Scholar
Greenberg v. Miami Children's Hospital, 264 F. Supp.2d 1064 (S.D. Fla. 2003).Google Scholar
See Johnson v. McIntosh, 21 U.S. (8 Wheat.) 543 (1823).Google Scholar
See TallBear, , supra note 82.Google Scholar
Na Iwi O Na Kupuna O Mokapu v. Dalton, 894 F. Supp. 1397 (D. Haw. 1995).Google Scholar
894 F. Supp., at 1403.Google Scholar
Id., at 1402–03.Google Scholar
Id., at 1403–04.Google Scholar
Id., at 1406.Google Scholar
Id., at 1409Google Scholar
Id., at 1409, n. 9.Google Scholar
Id.Google Scholar
Id., at 1418.Google Scholar
Id., at 1408.Google Scholar
Id., at 1407.Google Scholar
Id., at 1415–17.Google Scholar
Id., at 1410–14.Google Scholar
Id., at 1411–13.Google Scholar
Id., at 1413.Google Scholar
Id.Google Scholar
Id., at 1414.Google Scholar
Bonnichsen v. United States, 357 F.3d 962 (9th Cir. 2004).Google Scholar
357 F. 3d, at 979–80.Google Scholar
Id., at 966, 979.Google Scholar
Id., at 979.Google Scholar
See generally Clinton, , Goldberg, , Tsosie, , supra note 55.Google Scholar
See, e.g., Tsosie, R., “Sacred Obligations: Intercultural Justice and the Discourse of Treaty Rights,” University of California at Los Angeles Law Review 47, no. 6 (2000): 1615–72,.Google Scholar
Deloria, V. Jr., Wildcat, D. R., Power and Place: Indian Education in America (Golden, CO: Fulcrum Publishing, 2001).Google Scholar
His Holiness the Lama, Dalai, Ethics for the New Millennium (New York: Riverhead Books, 1999).Google Scholar