Genes, ownership, and indigenous reality

Social Science and Medicine

Volumn 65, Issue 10, 2007, Pages 2093-2104

  Gillett, Grant ^a   McKergow, Felicity ^a  

^a UNIVERSITY OF OTAGO   (New Zealand)

Author keywords

Consent; Ethics; Genetic information; Indigenous reality; New Zealand; Property

Indexed keywords

ETHICS; GENE; HEALTH CARE; INDIGENOUS POPULATION; LANGUAGE; OWNERSHIP;

ARTICLE; BIOTECHNOLOGY; CULTURAL FACTOR; DNA DETERMINATION; ETHICS; GENETIC ANALYSIS; HEALTH CARE; HUMAN; INDIGENOUS PEOPLE; INFORMED CONSENT; MEDICAL RESEARCH; NEW ZEALAND; PATENT; PATIENT CARE; PRIVACY;

ANTHROPOLOGY, CULTURAL; GENETIC PRIVACY; HUMANS; INFORMED CONSENT; NEW ZEALAND; OWNERSHIP;

AUSTRALASIA; NEW ZEALAND;

EID: 35348858030     PISSN: 02779536     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.socscimed.2007.06.024     Document Type: Article

References (85)

1. Anderlik M.R., and Rothstein M.A. Privacy and confidentiality of genetic information: What rules for the new science?. Annual Review of Genomics and Human Genetics 2 (2001) 401-433
2. Andrews L. My body, my property. Hastings Center Report 16 5 (1986) 28-38
3. Andrews L., and Nelkin D. Whose body is it anyway? Disputes over body tissue in a biotechnology age. Lancet 351 (1998) 53-57
4. Bagchi-Sen S., and Ghosh S. Law, technology, and development: Policy debates in the new millennium. Law and Policy 27 1 (2005) 1-5
5. Baird D., Geering L., Saville-Smith K., Thompson L., and Tuhipa T. Whose genes are they anyway? Report from the HRC Conference on Genetic Information (1995), Health Research Council, Auckland
6. Barkan E. Amending historical injustices: The restitution of cultural property-An overview. In: Barkan E., and Bush R. (Eds). Claiming the stones and naming the bones: Cultural property and the negotiation of national and ethnic identity (2002), Getty Research Institute, Los Angeles 16-50
7. Barkan E., and Bush R. Introduction. In: Barkan E., and Bush R. (Eds). Claiming the stones and naming the bones: Cultural property and the negotiation of national and ethnic identity (2002), Getty Research Institute, Los Angeles 1-15
8. Best E. Spiritual and mental concepts of the Maori (1973), Government Printer, Wellington
9. Brown M.F. Can culture be copyrighted? (Anthropology and the Indigenous). Current Anthropology 39 2 (1998) 19330
10. Brown M.F. Indigenous notions of ownership. Who owns native culture? (2003), Harvard University Press, Cambridge
11. Bush R. Property schmoperty! Philip Roth, postmodernism, and the contradictions of cultural property. In: Barkan E., and Bush R. (Eds). Claiming the stones and naming the bones: Cultural property and the negotiation of national and ethnic identity (2002), Getty Research Institute, Los Angeles 339-352
12. Campbell C.S. Body, self and the property paradigm. Hastings Center Report 22 (1992) 34-42
13. Cantwell, A.-M. (2000). "Who knows the power of his bones" Reburial Redux. In Annals of the New York Academy of sciences: Ethics and anthropology; Facing future issues in human biology, globalism and cultural property (Vol. 925, pp. 79-119).
14. Christakis N.A. Ethics are local: Engaging in cross-cultural variation in ethics for clinical research. Social Science & Medicine 35 9 (1992) 1079-1091
15. Coward H., and Hartrick G. Cognative and social science foundations for medical education and training in the information age: Perspectives on health and cultural pluralism. Clinical and Investigative Medicine 23 4 (2000) 261-265
16. De Witte J.I., and Ten Have H. Ownership of genetic material and information. Social Science & Medicine 45 1 (1997) 51-60
17. Eliade M. Myth and reality (1963), Harper, New York
18. Erlen J.A. Culture, ethics and respect: The bottom line is understanding. Orthopedic Nursing 17 6 (1998) 79-82
19. Everett M. The social life of genes: Privacy, property and the new genetics. Social Science & Medicine 56 (2003) 53-65
20. First International Conference on the Cultural & Intellectual Property Rights of Indigenous Peoples. (1993). The Mataatua Declaration on Cultural and Intellectual Property Rights of Indigenous Peoples: Commission on Human Rights Whakatane. New Zealand, 12-18 June 1993. 〈http://aotearoa.wellington.net.nz/imp/mata.htm〉; accessed 22.12.05 at 12.50.
21. Fluehr-Lobban C. Informed consent in anthropological research: We are not exempt. Human Organisation 53 1 (1994) 1-11
22. Gillett, G. (1996). Common sense and sensibilities: Medical confidentiality and privacy. New Zealand law conference, pp. 61-66.
23. Gillett G. Bioethics in the clinic (2004), Johns Hopkins University Press, Baltimore
24. Greely H.T. Genes, patents and indigenous peoples: Biomedical research and indigenous peoples rights. Cultural Survival Quarterly 20 2 (1996) 54-57
25. Greely H.T. Legal, ethical and social issues in human genome research. Annual Review of Anthropology 27 (1998) 473-502
26. Hall A. What the Navajo culture teaches about informed consent. HEC Forum 14 3 (2002) 241-245
27. Harrison S. Anthropological perspectives on the management of knowledge. Anthropology Today 11 5 (1995) 10-14
28. HDC. (1996). Code of Health and Disability Services Consumers' Rights Regulation. 〈www.hdc.org.nz/page.php?page=theact&content=theact_thecodedetail〉; accessed 18.01.05 at 10.44 a.m.
29. Health Research Council of New Zealand (HRC). (1998). Guidelines for researchers on health research involving Maori.
30. Heller M. Can patents deter innovation? The anticommons in biomedical research. Science 280 5364 (1998) 698-702
31. Howard C.A., Andrade S.J., and Byrd T. The ethical dimensions of cultural competence in border health care settings. Family and Community Health 23 4 (2001) 36-49
32. HRC. (1995). Whose genes are they anyway? Auckland.
33. Hunter E. Aboriginal health and history (1993), Cambridge University Press, Cambridge
34. Jaarsma S.R. Handle with care: Ownership and control of ethnographic materials (2002), University of Pittsburgh Press, Pittsburgh
35. Jackson, M. (2001). An exquisite politeness: The royal commission on genetic modification and the redefining of the treaty of Waitangi. 〈www.kaitiaki.org.nz〉.
36. Jansen P. Culturally competent health care. NZFP 29 5 (2002) 306-311
37. Jones D.G., and Harris R.J. Archaeological human remains: Scientific, cultural and ethical considerations. Current Anthropology 39 2 (1998) 253-264
38. Kaufert P.A. Health policy and the new genetics. Social Science & Medicine 51 6 (2000) 821-829
39. Kearns R., and Dyck I. Culturally safe research. In: Wepa D. (Ed). Cultural safety in Aotearoa New Zealand (2005), Pearson Education, North Shore
40. In: King M. (Ed). Te Ao Hurihuri (1992), Reed, Auckland
41. Lane, S. D., Rubinstein, R. A., Cibula, D., & Webster, N. (2000). Towards a public health approach to bioethics. In A. Cantwell (Ed.), Annals of the New York Academy of sciences: Ethics and anthropology; Facing future issues in human biology, globalism and cultural property (Vol. 925, pp. 25-36).
42. Lettington R., and Manek M. Indigenous knowledge rights: Recognizing alternative world views. Cultural Survival Quarterly 24 4 (2001). http://www.culturalsurvival.org/publications/csq/ 〈http://www.culturalsurvival.org/publications/csq/〉
43. Levi-Strauss C. The scope of anthropology (1967), Jonathan Cape, London
44. Levi-Strauss C. Myth and meaning (1978), Routledge, London
45. Lock M. Twice dead: Organ transplants and the reinvention of death (2001), University of California Press, Berkeley
46. Macklin R. Ethical relativism in a multicultural society. Kennedy Institute of Ethics Journal 8 1 (1998) 1-22
47. Marshall P.A. Anthropology and bioethics. Medical Anthropology Quarterly 6 1 (1992) 49-73
48. Maybury-Lewis D. Science and sensibility. Cultural Survival Quarterly 20 2 (1996). http://www.culturalsurvival.org/publications/csq/ 〈http://www.culturalsurvival.org/publications/csq/〉
49. Mead, S. H. (2004) Whakapapa and the human genome. Bioethics Pamphlet: Toi te taiao/The Bioethics Council.
50. Ministry of Health. (2000). Improving access to primary care for Māori and pacific peoples: A literature review commissioned by the health funding authority. 〈http://www.moh.govt.nz/moh.nsf/ea6005dc347e7bd44c2566a40079ae6f/4f31bb21ad92f9f0cc256f3f0073db3e?OpenDocument〉; accessed 31.01.05 at 3.33 p.m.
51. Ministry of Social Development. (2002). The social report. 〈socialreport.msd.govt.nz/〉; accessed 2.2.05 at 1.05 p.m.
52. Murray T. Genetic exceptionalism and future diaries: Is genetic information different from other medical information? On genetic secrets: Protecting privacy and confidentiality in the genetic era. In: Rothstein M.A. (Ed) (1997), Yale University Press, New Haven 60-73
53. National Health Committee. (2003). Molecular and genetic testing in New Zealand. A report from the NHC on Health and Disability.
54. Nelkin D., and Andrews L. Homo economicus: Commercialisation of body tissue in the age of biotechnology. Hastings Center Report 28 5 (1998) 30-39
55. Nelkin D., and Lindee M.S. The DNA Mystique: the gene as a cultural icon (2004), University of Michigan Press, Ann Arbor
56. O'Neill O. Informed consent and genetic information. Studies in History and Philosophy of Science Part C: Biological & Biomedical Science 32 4 (2001) 689-704
57. Papps E. Cultural safety: daring to be different. In: Wepa D. (Ed). Cultural safety in Aotearoa New Zealand (2005), Pearson Education, North Shore
58. Paterson R. Informed consent in New Zealand: Medical myths. Journal of the New Zealand Medical Association 116 (2003) 1183
59. Paul C., Liddell G., and Skegg P. Health research and privacy: Guidance notes for health researchers and ethics committees. Human Rights Law and Practice 1 4 (1995) 196-210
60. Pellegrino E., Mazzarella P., and Corsi P. Transcultural dimensions in medical ethics (1992), University Publishing Group Inc., Frederick, MD
61. Pompidou A., and Alan A. Research on the human genome and patentability-The ethical consequences. Journal of Medical Ethics 21 (1995) 69-71
62. Posey D.A. Selling grandma: Commodification of the sacred through intellectual property rights. In: Barkan E., and Bush R. (Eds). Claiming the stones and naming the bones: Cultural property and the negotiation of national and ethnic identity (2002), Getty Research Institute, Los Angeles 201-223
63. Posey D. Indigenous knowledge and ethics: A Darrell Posey reader (2004), Routledge, New York
64. Primer and Resource Guide. (2000). Indigenous people, genes and genetics what indigenous people should know about biocolonialism. 〈http://www.ipcb.org/publications/primers/htmls/ipgg.html〉; accessed 22.12.05 at 1.14 p.m.
65. Ramsden I. Towards cultural safety' in cultural safety in Aotearoa New Zealand. In: Wepa D. (Ed) (2005), Pearson Education, New Zealand
66. Rangihau, J. (1992). Being Maori in King (pp. 12-13).
67. Roberts L. Who owns the human genome?. Science 237 (1987) 358-361
68. Roberts M., and Fairweather J. South Island Maori perceptions of biotechnology (2004), AERU Lincoln University, Christchurch, NZ
69. Roberts, M., Haami, B., Benton, R., Satterfield, T, Finacune, M., Henare, M., et al. (2004). Whakapapa as a Maori mental construct: Some implications for the debate over genetic modification of organisms. The contemporary Pacific (pp. 1-28).
70. Roberts M., and Wills P. Understanding Maori epistemology: A scientific perspective. In: Wautischer H. (Ed). Tribal epistemologies: Essays in the philosophy of anthropology (1998), Ashgate, Aldershot 43-77
71. Royal Commission on Genetic Modification (RCGM). (2001). Section 4.
72. Sharp L.A. The commodification of the body and its parts. Annual Review of Anthropology 29 (2000) 287-328
73. Skene L. Who owns your body? Legal issues on the ownership of bodily material. Trends in Molecular Medicine 8 1 (2002) 48-49
74. Smith T. Ethics in medical research: A handbook of good practice (1999), Cambridge University Press, Cambridge
75. Spinello R. Property rights in genetic information. Ethics and Information Technology 6 1 (2004) 29-42
76. Suter S. The allure and peril of genetic exceptionalism: Do we need special genetics legislation. Washington University Law Quarterly 79 3 (2001)
77. Thomasma D.C. Bioethics and international human rights. Journal of Law and Medicine and Ethics 25 4 (1997) 295-306
78. United Nations. (1993). Declaration on the rights of indigenous peoples. 〈http://www.unhchr.ch/huridocda/huridoca.nsf/(Symbol)/E.CN.4.SUB.2.RES.1994.45.En?OpenDocument〉; accessed 29.01.05 at 12.07 p.m.
79. Walker, R. (1992). The relevance of Maori myth and traditions (in King, 1992).
80. Warren A., and Kare I. A philosophical perspective on the ethics and resolution of cultural property issues. In: Messenger P.M. (Ed). The ethics of collecting cultural property: Whose culture? Whose property (1989), University of New Mexico Press, Albuquerque
81. Watson L., and Solomon M. The Waitangi tribunal and the Maori claim to their cultural and intellectual heritage rights property. Cultural Survival Quarterly 24 4 (2001). http://www.culturalsurvival.org/publications/csq/ 〈http://www.culturalsurvival.org/publications/csq/〉
82. Wepa D. Culture and ethnicity: What is the question?. In: Wepa D. (Ed). Cultural safety in Aotearoa New Zealand (2005), Pearson Education, New Zealand
83. Williams D. Matauranga Maori and Taonga (2001), Waitangi Tribunal, Wellington
84. Wilson P. The domestication of the human species (1988), Yale University Press, New Haven pp. ix-x
85. Winship, I., & Marbrook, J. (1998). Ethical considerations relating to research in human genetics. 〈www.hrc.govt.nz/assets/pdfs/publications/ethumangen.pdf〉; accessed 16.01.05 at 4.32 p.m.