Rethinking medical ethics: A view from below

Developing World Bioethics

Volumn 4, Issue 1, 2004, Pages 17-41

  Farmer, Paul ^a   Campos, Nicole Gastineau ^a  

^a Program in Infectious Disease and Social Change   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ACQUIRED IMMUNE DEFICIENCY SYNDROME; CAUSE OF DEATH; CLINICAL RESEARCH; COMMUNITY; DIAGNOSTIC PROCEDURE; HUMAN; LANGUAGE; MALARIA; MEDICAL CARE; MEDICAL ETHICS; MORALITY; POPULATION; POVERTY; PRIORITY JOURNAL; PUBLICATION; REVIEW; SCIENCE; SOCIALIZATION; SOCIOECONOMICS; TUBERCULOSIS;

POROMITRA OSCITANS;

EID: 2342454502     PISSN: 14718731     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1471-8731.2004.00065.x     Document Type: Review

References (50)

1. J.S. Mukherjee. HIV-1 Care in Resource-Poor Settings: A View from Haiti. Lancet 2003; 362: 994-995, at 994.
2. P. Farmer. On Suffering and Structural Violence: A View from Below. Dædalus 1995; 125: 261-283.
3. H. Brody. 1992. The Healer's Power. New Haven & London. Yale University Press: 12.
4. V. Fuchs. 1975. Who Shall Live? Health, Economics, and Social Choice. New York. Basic Books.
5. Roughly 400 of these men had syphilis, and most lived in poverty. Despite the 1947 discovery of a cure for the disease - to this day, syphilis is treated with penicillin - subjects were never offered that very inexpensive drug, even though they had joined the study assuming that they would be treated. Nor were they informed of the study's real purpose. (S.M. Reverby, ed. 2000. Tuskegee Truths: Rethinking the Tuskegee Syphilis Study. Chapel Hill. University of North Carolina Press. A.M. Brandt. 1987. No Magic Bullet. A Social History of Venereal Disease in the United States Since 1880. New York. Oxford University Press.)
6. Roughly 400 of these men had syphilis, and most lived in poverty. Despite the 1947 discovery of a cure for the disease - to this day, syphilis is treated with penicillin - subjects were never offered that very inexpensive drug, even though they had joined the study assuming that they would be treated. Nor were they informed of the study's real purpose. (S.M. Reverby, ed. 2000. Tuskegee Truths: Rethinking the Tuskegee Syphilis Study. Chapel Hill. University of North Carolina Press. A.M. Brandt. 1987. No Magic Bullet. A Social History of Venereal Disease in the United States Since 1880. New York. Oxford University Press.)
7. See, for example, commentary on Norplant trials in Brazil. A.R. Dos Reis. Norplant in Brazil: Implantation Strategy in the Guise of Scientific Research. Issues in Reproductive & Genetic Engineering: Journal of International Feminist Analysis 1990; 3: 111-118.
8. P. Farmer. 1992. AIDS and Accusation: Haiti and the Geography of Blame. Berkeley & Los Angeles. University of California Press.
9. G. Lipovetsky. 1993. L'Ere du vide: Essais sur l'individualisme contemporain. Paris. Gallimard.
10. H. French. AIDS Research in Africa: Juggling Risks and Hope. New York Times 9 October, 1997: A1, A14.
11. Also consider the more recent example of a randomised-control trial conducted between November 1994 and October 1998, which examined the relationship between serum viral load, concurrent sexually transmitted diseases, and other known and putative HIV risk factors. The research team screened 15127 individuals in a rural district of Uganda, of whom 415 were identified as HIV-positive with an initially HIV-negative partner. The researchers then tracked these serodiscordant couples for thirty months, following the viral load of the infected partner and the rate of seroconversion among the previously uninfected partners. The study concludes that 'viral load is the chief predictor of the risk of heterosexual transmission of HIV-1.' (T.C. Quinn, M.J. Wawer, N. Sewankambo, D. Serwadda, C. Li, F. Wabwire-Mangen, M.O. Meehan, T. Lutalo & R.H. Gray. Viral Load and Heterosexual Transmission of Human Immunodeficiency Virus Type 1. New England Journal of Medicine 2000; 342: 921-929.) In an accompanying editorial, New England Journal of Medicine editor Marcia Angell voiced her hesitation about publishing the study and was quite pointed in her criticism: 'It is important to be clear about what this study meant for the participants. It meant that for up to 30 months, several hundred people with HIV infection were observed but not treated.' Furthermore, 'the very condition that justified doing the study in Uganda in the first place - the lack of availability of antiretroviral treatment - will greatly limit the relevance of the results there.' (M. Angell. Investigators' Responsibilities for Human Subjects in Developing Countries. New England Journal of Medicine 2000; 342: 967-969.) Explicit comparisons to Tuskegee were made in the popular press; in the electronic magazine Slate, one writer asked: 'The ... volunteers in the sample were not offered treatment nor were their healthy sex partners informed that the research subjects were HIV positive. Excuse please, but why isn't this like the [New England Journal of Medicine] supporting the Tuskegee experiments?' (S. Shuger. Supreme Court Cover-Up. Slate 30 March, 2000. Available at: http://slate.msn.com/?id=1004976.)
12. Also consider the more recent example of a randomised-control trial conducted between November 1994 and October 1998, which examined the relationship between serum viral load, concurrent sexually transmitted diseases, and other known and putative HIV risk factors. The research team screened 15127 individuals in a rural district of Uganda, of whom 415 were identified as HIV-positive with an initially HIV-negative partner. The researchers then tracked these serodiscordant couples for thirty months, following the viral load of the infected partner and the rate of seroconversion among the previously uninfected partners. The study concludes that 'viral load is the chief predictor of the risk of heterosexual transmission of HIV-1.' (T.C. Quinn, M.J. Wawer, N. Sewankambo, D. Serwadda, C. Li, F. Wabwire-Mangen, M.O. Meehan, T. Lutalo & R.H. Gray. Viral Load and Heterosexual Transmission of Human Immunodeficiency Virus Type 1. New England Journal of Medicine 2000; 342: 921-929.) In an accompanying editorial, New England Journal of Medicine editor Marcia Angell voiced her hesitation about publishing the study and was quite pointed in her criticism: 'It is important to be clear about what this study meant for the participants. It meant that for up to 30 months, several hundred people with HIV infection were observed but not treated.' Furthermore, 'the very condition that justified doing the study in Uganda in the first place - the lack of availability of antiretroviral treatment - will greatly limit the relevance of the results there.' (M. Angell. Investigators' Responsibilities for Human Subjects in Developing Countries. New England Journal of Medicine 2000; 342: 967-969.) Explicit comparisons to Tuskegee were made in the popular press; in the electronic magazine Slate, one writer asked: 'The ... volunteers in the sample were not offered treatment nor were their healthy sex partners informed that the research subjects were HIV positive. Excuse please, but why isn't this like the [New England Journal of Medicine] supporting the Tuskegee experiments?' (S. Shuger. Supreme Court Cover-Up. Slate 30 March, 2000. Available at: http://slate.msn.com/?id=1004976.)
13. Also consider the more recent example of a randomised-control trial conducted between November 1994 and October 1998, which examined the relationship between serum viral load, concurrent sexually transmitted diseases, and other known and putative HIV risk factors. The research team screened 15127 individuals in a rural district of Uganda, of whom 415 were identified as HIV-positive with an initially HIV-negative partner. The researchers then tracked these serodiscordant couples for thirty months, following the viral load of the infected partner and the rate of seroconversion among the previously uninfected partners. The study concludes that 'viral load is the chief predictor of the risk of heterosexual transmission of HIV-1.' (T.C. Quinn, M.J. Wawer, N. Sewankambo, D. Serwadda, C. Li, F. Wabwire-Mangen, M.O. Meehan, T. Lutalo & R.H. Gray. Viral Load and Heterosexual Transmission of Human Immunodeficiency Virus Type 1. New England Journal of Medicine 2000; 342: 921-929.) In an accompanying editorial, New England Journal of Medicine editor Marcia Angell voiced her hesitation about publishing the study and was quite pointed in her criticism: 'It is important to be clear about what this study meant for the participants. It meant that for up to 30 months, several hundred people with HIV infection were observed but not treated.' Furthermore, 'the very condition that justified doing the study in Uganda in the first place - the lack of availability of antiretroviral treatment - will greatly limit the relevance of the results there.' (M. Angell. Investigators' Responsibilities for Human Subjects in Developing Countries. New England Journal of Medicine 2000; 342: 967-969.) Explicit comparisons to Tuskegee were made in the popular press; in the electronic magazine Slate, one writer asked: 'The ... volunteers in the sample were not offered treatment nor were their healthy sex partners informed that the research subjects were HIV positive. Excuse please, but why isn't this like the [New England Journal of Medicine] supporting the Tuskegee experiments?' (S. Shuger. Supreme Court Cover-Up. Slate 30 March, 2000. Available at: http://slate.msn.com/?id=1004976.)
14. Also consider the more recent example of a randomised-control trial conducted between November 1994 and October 1998, which examined the relationship between serum viral load, concurrent sexually transmitted diseases, and other known and putative HIV risk factors. The research team screened 15127 individuals in a rural district of Uganda, of whom 415 were identified as HIV-positive with an initially HIV-negative partner. The researchers then tracked these serodiscordant couples for thirty months, following the viral load of the infected partner and the rate of seroconversion among the previously uninfected partners. The study concludes that 'viral load is the chief predictor of the risk of heterosexual transmission of HIV-1.' (T.C. Quinn, M.J. Wawer, N. Sewankambo, D. Serwadda, C. Li, F. Wabwire-Mangen, M.O. Meehan, T. Lutalo & R.H. Gray. Viral Load and Heterosexual Transmission of Human Immunodeficiency Virus Type 1. New England Journal of Medicine 2000; 342: 921-929.) In an accompanying editorial, New England Journal of Medicine editor Marcia Angell voiced her hesitation about publishing the study and was quite pointed in her criticism: 'It is important to be clear about what this study meant for the participants. It meant that for up to 30 months, several hundred people with HIV infection were observed but not treated.' Furthermore, 'the very condition that justified doing the study in Uganda in the first place - the lack of availability of antiretroviral treatment - will greatly limit the relevance of the results there.' (M. Angell. Investigators' Responsibilities for Human Subjects in Developing Countries. New England Journal of Medicine 2000; 342: 967-969.) Explicit comparisons to Tuskegee were made in the popular press; in the electronic magazine Slate, one writer asked: 'The ... volunteers in the sample were not offered treatment nor were their healthy sex partners informed that the research subjects were HIV positive. Excuse please, but why isn't this like the [New England Journal of Medicine] supporting the Tuskegee experiments?' (S. Shuger. Supreme Court Cover-Up. Slate 30 March, 2000. Available at: http://slate.msn.com/?id=1004976.)
15. Also consider the more recent example of a randomised-control trial conducted between November 1994 and October 1998, which examined the relationship between serum viral load, concurrent sexually transmitted diseases, and other known and putative HIV risk factors. The research team screened 15127 individuals in a rural district of Uganda, of whom 415 were identified as HIV-positive with an initially HIV-negative partner. The researchers then tracked these serodiscordant couples for thirty months, following the viral load of the infected partner and the rate of seroconversion among the previously uninfected partners. The study concludes that 'viral load is the chief predictor of the risk of heterosexual transmission of HIV-1.' (T.C. Quinn, M.J. Wawer, N. Sewankambo, D. Serwadda, C. Li, F. Wabwire-Mangen, M.O. Meehan, T. Lutalo & R.H. Gray. Viral Load and Heterosexual Transmission of Human Immunodeficiency Virus Type 1. New England Journal of Medicine 2000; 342: 921-929.) In an accompanying editorial, New England Journal of Medicine editor Marcia Angell voiced her hesitation about publishing the study and was quite pointed in her criticism: 'It is important to be clear about what this study meant for the participants. It meant that for up to 30 months, several hundred people with HIV infection were observed but not treated.' Furthermore, 'the very condition that justified doing the study in Uganda in the first place - the lack of availability of antiretroviral treatment - will greatly limit the relevance of the results there.' (M. Angell. Investigators' Responsibilities for Human Subjects in Developing Countries. New England Journal of Medicine 2000; 342: 967-969.) Explicit comparisons to Tuskegee were made in the popular press; in the electronic magazine Slate, one writer asked: 'The ... volunteers in the sample were not offered treatment nor were their healthy sex partners informed that the research subjects were HIV positive. Excuse please, but why isn't this like the [New England Journal of Medicine] supporting the Tuskegee experiments?' (S. Shuger. Supreme Court Cover-Up. Slate 30 March, 2000. Available at: http://slate.msn.com/?id=1004976.)
16. P. Lurie & S.M. Wolfe. Unethical Trials of Interventions to Reduce Perinatal Transmission of the Human Immunodeficiency Virus in Developing Countries. New England Journal of Medicine 1997; 337: 853-856.
17. M. Angell. The Ethics of Clinical Research in the Third World. New England Journal of Medicine 1997; 337: 847-849.
18. L. Churchill. Are We Professionals? A Critical Look at the Social Role of Bioethicists. Dædalus 1999; 128: 253-274, at 255.
19. Emanuel et al. have suggested guidelines for 'what makes clinical research ethical.' Among their criteria is 'fair subject selection' - subjects should not be vulnerable individuals and must have the potential to experience the benefits of any ethical research project. (EJ. Emanuel, D. Wendler & C. Grady. What Makes Clinical Research Ethical? Journal of the American Medical Association 2000; 283: 2701-2711.)
20. Several patients being treated for HIV at the Clinique Bon Sauveur in rural Haiti are quoted throughout this article. These interviews are not part of a formal ethnographic study, but rather an effort to convey patient stories in their own words.
21. The research project mentioned has, by report, since been terminated.
22. On the growth of global inequality since 1980, see: J.K. Galbraith. A Perfect Crime: Global Inequality. Dædalus 2002; 131: 11-25.
23. N. Scheper-Hughes. The Global Traffic in Human Organs. Current Anthropology 2000; 41: 191-224, at 193.
24. Organs Watch. University of California, Berkeley. Available at: http://sunsite.berkeley.edu/biotech/organswatch/
25. P. Wise. Confronting Racial Disparities in Infant Mortality: Reconciling Science and Politics. American Journal of Preventive Medicine 1993; 9: 7-16, at 9.
26. P. Farmer. 2003. Pathologies of Power: Health, Human Rights, and the New War on the Poor. Berkeley. University of California Press.
27. P. Farmer & N. Gastineau. Rethinking Health and Human Rights: Time for a Paradigm Shift. Journal of Law, Medicine & Ethics 2002; 30: 655-666.
28. For a review see: P.E. Farmer, A.S. Kononets, S.E. Borisov, A. Goldfarb, T. Healing & M. McKee. 1999. Recrudescent Tuberculosis in the Russian Federation. In The Global Impact of Drug-Resistant Tuberculosis. Program in Infectious Disease and Social Change, ed. Boston. Program in Infectious Disease and Social Change: 39-83. See also: V. Stern & R. Jones. 1999. Sentenced to Die? The Problem of TB in Prisons in East and Central Europe and Central Asia. London. International Centre for Prison Studies, King's College.
29. For a review see: P.E. Farmer, A.S. Kononets, S.E. Borisov, A. Goldfarb, T. Healing & M. McKee. 1999. Recrudescent Tuberculosis in the Russian Federation. In The Global Impact of Drug-Resistant Tuberculosis. Program in Infectious Disease and Social Change, ed. Boston. Program in Infectious Disease and Social Change: 39-83. See also: V. Stern & R. Jones. 1999. Sentenced to Die? The Problem of TB in Prisons in East and Central Europe and Central Asia. London. International Centre for Prison Studies, King's College.
30. For one such study, see: G. Bukhman. 2001. Reform and Resistance in Post-Soviet Tuberculosis Control. Doctoral Dissertation, University of Arizona. Ann Arbor. University Microfilms.
31. M.E. Kimerling, H. Kluge, N. Vezhnina, T. Iacovazzi, T. Demeulenaere, F. Portaels & F. Matthys. Inadequacy of the Current WHO Re-Treatment Regimen in a Central Siberian Prison: Treatment Failure and MDRTB. International Journal of Tuberculosis and Lung Disease 1999; 3: 451-453.
32. P. Farmer. Managerial Successes, Clinical Failures. International Journal of Tuberculosis and Lung Disease 1999; 3: 365-367.
33. P. Farmer, J. Bayona, S. Shin, L. Alvarez, M. Becerra, E. Nardell, C. Nuñez, E. Sanchez, R. Timperi & J.Y. Kim. Preliminary Results of Community-Based MDRTB Treatment in Lima, Peru. International Journal of Tuberculosis and Lung Disease 1998; 2 (Suppl. 2): S371. C. Mitnick, J. Bayona, E. Palacios, S. Shin, J. Furin, F. Alcantara, E. Sanchez, M. Sarria, M. Becerra, M.C. Fawzi, S. Kapiga, D. Neuberg, J.H. Maguire, J.Y. Kim & P. Farmer. Community-Based Therapy for Multidrug-Resistant Tuberculosis in Lima, Peru. New England Journal of Medicine 2003; 348: 119-128.
34. P. Farmer, J. Bayona, S. Shin, L. Alvarez, M. Becerra, E. Nardell, C. Nuñez, E. Sanchez, R. Timperi & J.Y. Kim. Preliminary Results of Community-Based MDRTB Treatment in Lima, Peru. International Journal of Tuberculosis and Lung Disease 1998; 2 (Suppl. 2): S371. C. Mitnick, J. Bayona, E. Palacios, S. Shin, J. Furin, F. Alcantara, E. Sanchez, M. Sarria, M. Becerra, M.C. Fawzi, S. Kapiga, D. Neuberg, J.H. Maguire, J.Y. Kim & P. Farmer. Community-Based Therapy for Multidrug-Resistant Tuberculosis in Lima, Peru. New England Journal of Medicine 2003; 348: 119-128.
35. MSF Ends Tuberculosis Treatment in Kemerovo Region, Russia. 30 September, 2003. Available at: http://www.msf.org/countries/page.cfm?articleid= D657393B-C8E6-4CD7-9835259FD4F8AFEF
36. P. Farmer. 1999. Infections and Inequalities. Berkeley. University of California Press.
37. J. Rawls. 1999. A Theory of Justice. Revised edition. Cambridge, MA. Harvard University Press: § 26, pp. 130-139; § 13, pp. 65-73. Rawls's more precise definition of the difference, or maximin principle, is that society must choose the scheme of institutions that most advantages the least advantaged persons in society. In practice, this emphasis on the absolute position of the most disadvantaged in society may force society to forgo schemes that produce lesser aggregate wealth or utility. Other scholars have cited the tensions between distributive 'injustice' and over-consumption by the wealthy, which may lead to such harms as environmental degradation and exploitation of the poor. See: A. Jameton & J. Pierce. Environment and Health: Sustainable Health Care and Emerging Ethical Responsibilities. Canadian Medical Association Journal 2001; 164: 365-369.
38. J. Rawls. 1999. A Theory of Justice. Revised edition. Cambridge, MA. Harvard University Press: § 26, pp. 130-139; § 13, pp. 65-73. Rawls's more precise definition of the difference, or maximin principle, is that society must choose the scheme of institutions that most advantages the least advantaged persons in society. In practice, this emphasis on the absolute position of the most disadvantaged in society may force society to forgo schemes that produce lesser aggregate wealth or utility. Other scholars have cited the tensions between distributive 'injustice' and over-consumption by the wealthy, which may lead to such harms as environmental degradation and exploitation of the poor. See: A. Jameton & J. Pierce. Environment and Health: Sustainable Health Care and Emerging Ethical Responsibilities. Canadian Medical Association Journal 2001; 164: 365-369.
39. D. Brock. Broadening the Bioethics Agenda. Kennedy Institute of Ethics Journal 2000; 10: 21-38. Philosopher Norman Daniels has also contributed significantly to bioethical literature by applying Rawlsian principles to justify the right to health (see, for example: N. Daniels. 2002. Justice, Health, and Health Care. In Medicine and Social Justice. R. Rhodes, M. Battin & A. Silvers, eds. Oxford. Oxford University Press: 6-23). Both Brock and Daniels discuss resource prioritisation for the worst off.
40. D. Brock. Broadening the Bioethics Agenda. Kennedy Institute of Ethics Journal 2000; 10: 21-38. Philosopher Norman Daniels has also contributed significantly to bioethical literature by applying Rawlsian principles to justify the right to health (see, for example: N. Daniels. 2002. Justice, Health, and Health Care. In Medicine and Social Justice. R. Rhodes, M. Battin & A. Silvers, eds. Oxford. Oxford University Press: 6-23). Both Brock and Daniels discuss resource prioritisation for the worst off.
41. This attitude toward prisoners is also hard to square with an equally important, though largely forgotten, aspect of Rawls's theory of justice - the inviolability of each person. As Rawls himself elegantly states, '[e]ach person possesses an inviolability founded on justice that even the welfare of society as a whole cannot override.' Rawls, op. cit. note 26, § 1, p. 3.
42. J.D. Caputo. 1993. Against Ethics: Contributions to a Poetics of Obligation with Constant Reference to Deconstruction. Bloomington. Indiana University Press.
43. Berger and Luckmann note that 'The sociology of knowledge must concern itself with whatever passes for "knowledge" in a society, regardless of the ultimate validity or invalidity (by whatever criteria) of such "knowledge". And in so far as all human "knowledge" is developed, transmitted and maintained in social situations, the sociology of knowledge must seek to understand the processes by which this is done in such a way that a taken-for-granted "reality" congeals for the man in the street. In other words, we contend that the sociology of knowledge is concerned with the analysis of the social construction of reality.' (P. Berger & T. Luckmann. 1966. The Social Construction of Reality: A Treatise on the Sociology of Knowledge. Garden City, NY. Anchor Books.)
44. T. Kuhn. 1970. The Structure of Scientific Revolutions. Second edition. Chicago. University of Chicago Press: 122.
45. Churchill, op. cit. note 13, p. 259.
46. P. Farmer. Pathologies of Power: Rethinking Health and Human Rights. American Journal of Public Health 1999; 89: 1486-1496.
47. M. dos Anjos. Medical Ethics in the Developing World: A Liberation Theology Perspective. Journal of Medicine and Philosophy 1996; 21: 629-637.
48. T. Asad, ed. 1975. Anthropology and the Colonial Encounter. London. Ithaca Press & Humanities.
49. A. Brandt. 1988. AIDS: From Social History to Social Policy. In AIDS: The Burdens of History. E. Fee & D.M. Fox, eds. Berkeley. University of California Press: 147-171, at 168.
50. Mukherjee, op. cit. note 1, p. 995.