Global bioethics: Utopia or reality?

Developing World Bioethics

Volumn 8, Issue 2, 2008, Pages 70-81

  Hellsten, Sirkku K ^a  

^a UNIVERSITY OF HELSINKI   (Finland)

Author keywords

Biodemocracy; Biopolitics; Culture; Global bioethics; Justice; Relativism; Universalism

Indexed keywords

ARTICLE; BIOETHICS; CULTURAL ANTHROPOLOGY; CULTURAL FACTOR; ETHICS; HUMAN; INTERNATIONAL COOPERATION; MEDICAL ETHICS; PHILOSOPHY; POLITICAL SYSTEM; POLITICS; SOCIAL BEHAVIOR; SOCIAL JUSTICE; SOCIAL PSYCHOLOGY;

BIOETHICAL ISSUES; BIOETHICS; CULTURAL CHARACTERISTICS; CULTURAL DIVERSITY; DEMOCRACY; ETHICS, CLINICAL; ETHICS, MEDICAL; HUMANS; INTERNATIONAL COOPERATION; POLITICS; PRINCIPLE-BASED ETHICS; SOCIAL JUSTICE; SOCIAL RESPONSIBILITY; SOCIAL VALUES; UTOPIAS;

EID: 48349145824     PISSN: 14718731     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1471-8847.2006.00162.x     Document Type: Article

References (61)

1. As evidenced in General Medical Council (GMC). 1993. Tomorrow's Doctors. London: GMC, which highlights these two key issues of confidentiality and informed consent. See sections 29 & 30 on 'Medico-legal and ethical issues'.
2. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. 1979. The Belmont Report: Ethical Principals and Guidelines for the Protection of Human Subjects of Research. Washington, DC: Department of Health, Education, and Welfare, National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research.
3. th ed. New York, NY: Oxford University Press.
4. H. Widdows, D. Dickenson & S. Hellsten. Global Bioethics. New Rev Bioeth 2003; 1: 101-116.
5. T.L. Beauchamp. Principlism and its Alleged Competitors. Kennedy Inst Ethics J 1995; 5: 181-198.
6. H. Kazumasa, ed. 1997. Japanese and Western Bioethics: Studies in Moral Diversity. Boston, MA. Kluwer Academic Publishers;
7. G.B. Tangwa. 1999. Genetic Information. Questions and Worries from an African Background. In Genetic Information: Acquisition, Access and Control. A.K. Thompson & R.F. Chadwick, eds. New York, NY/London: Kluwer Academic/Plenum Publishers: 275-281.
8. R. Fan. Critical Care Ethics in Asia: Global or Local? J Med Philos 1999; 6: 549-562; Kazumasa, op. cit. note 6;
9. Y. Nakata, T. Goto & S. Morita. Serving the Emperor without Asking: Critical Care Ethics in Japan. J Med Philos 1998; 6: 601-615.
10. R. Brauman. 2002. Questioning Health and Human Rights. New York, NY: Carnegie Council. Available at: http://www.carnegiecouncil.org/viewMedia. php/prmTemplateID/8/prmID/643 [Accessed 4 June 2006];
11. R. Brauman. 2002. Controversies within Health and Human Rights. New York, NY: Carneagie Council. Available at: http://www.cceia.org/viewMedia. php/prmTemplateID/8/prmID/93 [Accessed 4 June 2006]. However, in the history of medicine, it is clear that what has been considered as illness or health has changed radically (e.g. sexual preferences).
12. Ibid.
13. Ibid.
14. Kazumasa, op. cit. note 6; S.M. Okin. 2000. Feminism, Women's Human Rights and Cultural Differences. In Decentering the Center: Philosophy for a Multicultural Postcolonial and Feminist World. U. Narayan & S. Harding, eds. Bloomington, IN: Indiana University Press: 26-46;
15. S.M. Okin. Mistresses of their Own Destiny: Group Rights, Gender and Realistic Rights of Exit. Ethics 2002; 112: 205-230;
16. A. Shachar. Group Identity and Women's Rights in Family Law: the Perils of Multicultural Accommodation. J Polit Philos 1998; 6: 285-305; Tangwa, op. cit. note 6;
17. R. Tong. Towards a Feminist Global Bioethics. Health Care Anal 2001; 9: 229-246;
18. I.M. Young. 1990. Justice and the Politics of Difference. Princeton, NJ: Princeton University Press.
19. Parallel arguments can be used for other young ethical disciplines; for example, environmental ethics as a response to the environmental crisis, and business ethics (or issues of corporate responsibility) to the globalisation of businesses, organisations and IT beyond the nation state and traditional spheres of governance.
20. Widdows et al., op. cit. note 4.
21. J. Husted. 1997. Autonomy and a Right not to Know. In The Right to Know and the Right not to Know. R. Chadwick, M. Levitt & D. Shickle, eds. Aldershot: Ashgate: 55-68;
22. B.M. Knoppers, ed. 1997. Human D.N.A: Law and Policy. The Hague: Kluwer Law International;
23. B.M. Knoppers, 1999. Who Should have the Access to Genetic Information? In The Genetic Revolution and Human Rights. J. Burley, ed. Oxford: Oxford University Press; The potential for breaches in an individualistic view to confidentially is clear. For example, there is always the possibility (currently fairly remote due to the small number of people who have material and information stored in databanks) that individuals and genetically related family members can be identified at any future date. Not only is confidentiality difficult to guarantee practically, because of the identifying potential of genetic material, but there is the underlying question of whether confidentiality should continue to be paramount. For example, if an individual tests positive for a genetic condition, such as Huntington's disease, or as a carrier of the BRCA1 or BRCA2 (indicators for breast cancer) or cystic fibrosis gene, this information has relevance for family members (consanguineous relations may wish to be tested themselves, and sexual partners may need the information when making reproductive choices). Michael Parker has criticised traditional models of consent on the grounds that they assume that the individual has the right to refuse to share such information. He has suggested that as genetic information is drawn from a 'joint account' the default position should be that such information is available for the testing, care and treatment of family members. He is not saying that information should never be withheld, however, withholding information would be permissible if serious harm would be caused to the individual.
24. Widdows et al., op. cit. note 4.
25. For example, in April 1993, the then US Secretary of Commerce, Ron Brown, filed a patent claim on the cell line of a 26-year-old Guayami woman from Panama - because some Guayami people carry the human T-cell lymphotrophic virus (HTLV) type 1, and their antibodies may have been useful in AIDS and leukaemia research. International protest and action by the Guayami General Congress and others led to the withdrawal of the patent claim by Brown in November 1993.
26. D. Nelkin & S. Lindee. 1995. The D.N.A. Mystique: The Gene as a Cultural Icon. New York, NY: W.H. Freeman & Co.;
27. M.A. Rothstein, ed. 1997. Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. London: Yale University Press;
28. D. Shickle. 1997. Do 'All Men Desire to Know'? A Right of Society to Choose Not to Know about the Genetics of Personality Traits, In The Right to Know and the Right not to Know. R. Chadwick, M. Levitt and D. Shickle, eds. Aldershot: Ashgate: 69-78.
29. On biopolitics, see M. Foucault. 1965. Madness and Civilisation. A History of Insanity in the Age of Reason. New York, NY: Vintage Books;
30. and M. Foucault. 1973. The Birth of the Clinic, Archaeology of Medical Perception. New York, NY: Random House.
31. See S.K. Hellsten. Multicultural Issues and Human Rights in Maternal-Fetal Medicine. In Ethical Issues in Maternal-Fetal Medicine. D. Dickenson, ed. Cambridge: Cambridge University Press: 39-60;
32. and S.K. Hellsten. Rationalizing Circumcision: From Tradition to Fashion, from Public Health to Individual Freedom. J Med Ethics 2004: 30: 248-253.
33. This can be found in earlier anthropological research on 'the ranking of human races', and even currently in the much disputed research on the IQ between whites and blacks, as well as the differences between the male and female brains. See Foucault, op. cit. note 18.
34. R. Cook-Deegan. 1996. Gene Wars: Science, Politics and the Human Genome. New York, NY: Norton & Co.
35. There are differences in legal and ethical understandings about the nature of genetic material - whether it is property or person - in different jurisdictions (or even within different laws within the same jurisdiction). For example, in New Jersey there was a clear clash between the governor and the legislature when, in 1996, Governor Christie Whiteman vetoed a bill that had been unanimously passed by the legislature because it described genetic information as 'personal property' (Roche, 1997); personal property is one of a number of possible definitions, others are, 'information', 'common property', 'intellectual property', 'person' and 'extension of person' (Gold, 1996; Gottlieb, 1988; Litman, 1997.)
36. To use just one example, the Hagahai people of Papua New Guinea were the subject of a patent application filed by the US National Institute of Health (NIH) and an anthropologist, Dr Carol Jenkins, who was doing research on the Hagahai. The Hagahai are a tribe of about 260 persons who only came into consistent contact with the outside world in 1984. The patent was granted on a cell line containing unmodified Hagahai DNA and several methods for its use in detecting HTLV-1-related retroviruses in 1994. Under the 'benefit-sharing' agreement, the Hagahai were entitled to 50 per cent of any royalties accrued by the researcher. However, the patent itself made no concrete provision for the Hagahai to receive any compensation for becoming the property of the US government. The patent was 'disclaimed' in 1996, however the Hagahai cell line remains in the public domain and is now available to the public at the American Type Culture Collection as ATCC Number: CRL-10528 Organism: Homo Sapiens (human) at a cost of US$216. This example, raises issues not just about property rights and exploitation, but also returns us to questions of group consent.
37. L.S. Cahill. Genetics, Commodification and Social Justice in the Globalization Era. Kennedy Inst Ethics J 2001; 11: 221-238;
38. D. Dickenson. 2002. Who Owns Embryonic and Fetal Tissue? In Ethical Issues in Maternal-Fetal Medicine. D. Dickenson, ed. Cambridge: Cambridge University Press: 233-245;
39. E.R. Gold & A. Gallochat. The European Biotech Directive: Past as Prologue. European Law Journal 2001; 7: 331-366;
40. R.C. Lee & D. Morgan. 2001. Human Fertilisation and Embryology: Regulating the Reproductive Revolution. Lincoln: Blackstone Press.
41. Widdows et al., op. cit. note 4.
42. P. Harris & P. Siplon. International Obligations and Human Health: Evolving Policy Responses to HIV/AIDS. Ethics Int Aff 2001; 15: 29-52.
43. These issues are central, because the inequality might sometimes be justified even by the language of human rights, as can be seen in the case of reproductive rights in which affluent societies tend to refer to a woman's or couple's right to reproduce and in poor societies to a woman's or family's right not to reproduce.
44. J. Burley, ed. 1999. The Genetic Revolution and Human Rights. New York, NY: Oxford University Press;
45. J. Glover, 1999. Eugenics and Human Rights. In The Genetic Revolution and Human Rights. J. Burley, ed. New York NY: Oxford University Press: 101-124;
46. J. Robertson. 1994. Children of Choice. Freedom and the New Reproductive Technologies. Princeton, NJ: Academic Press;
47. S.K. Hellsten. 1999. Biotechnology, Genetic Information and Community. In Genetic Information: Acquisition, Access and Control. A. Thompson & R. Chadwick, eds. New York, NY/London: Kluwer Academic/Plenum Publishers: 297-308.
48. A. Donchin & L. Purdy. 1999. Embodying Bioethics. Recent Feminist Advances. Oxford: Rowman & Littlefield Publishers;
49. S. Wolf. 1996. Feminism and Bioethics. Beyond Reproduction. New York, NY: Oxford University Press.
50. M. Kuczewski. 1997. Fragmentation and Consensus: Communitarian and Casuist Bioethics. Washington DC: George Washington University Press.
51. D. Goulet. 1995. Development Ethics. A Guide to Theory and Practice. New York, NY: The Apex Press: 19.
52. Kazumasa, op. cit. note 6: Tangwa, op. cit. note 6.
53. G. Koski & S.L. Nightingale. Research Involving Human Subjects in Developing Countries. N Engl J Med 2001; 345: 136-138.
54. A parallel argument is underway in the debate surrounding the validity and viability of human rights, which provides useful literature and parallel arguments. See O. O'Neill. 1996. Towards Justice and Virtue: A Constructive Account of Practical Reasoning. Cambridge: Cambridge University Press.
55. See Donchin & Purdy, op. cit. note 29; see Wolf, op. cit. note 29; see Kuczewski, op. cit. note 30.
56. Goulet, op. cit. note 31.
57. Kazumasa, op. cit. note 6; Tangwa, op. cit. note 6.
58. C. Taylor et al. 1994. Multiculturalism. Princeton, NJ: Princeton University Press;
59. R. Macklin. 1999. Against Relativism. Oxford: Oxford University Press; O'Neill, op. cit. note 34;
60. B. Barry. 2001 Culture and Equality. Cambridge: Polity Press;
61. D. Dickenson. 2003. Risk and Luck in Medical Ethics. Cambridge: Polity Press.