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Original Articles

A Service Or a Right: Informed Consent for HIV-Positive Latin American Men in Japan

Pages 197-212
Published online: 20 Jul 2007

Since April 1996, Japanese health care providers who practise informed consent have been financially rewarded. Although there is no precedent for this financial gain, there are no detailed studies. Focused on a group of Latin American men living with HIV/AIDS, this paper clarifies the actual practices of informed consent at Japanese medical facilities. Twenty HIV-positive men were interviewed in order to investigate how they obtained medical treatment and how they were informed about their physical condition. From April to September 2002 and during August 2003 and 2004, a set of six interviews were conducted with each male, who were 28–37 years old. Participants were acquired through a hospital and a non-governmental organization, and by snowball sampling. The interviews showed that most of the informants received information concerning medical treatment, but they were advised neither about alternative treatments nor about the feasibility of seeking a third party's advice. Informed consent and communication between the informants and physicians were obstructed by language and structural, as well as cultural barriers. In conclusion, this paper adds a new dimension to the understanding of informed consent as the authors regard the practice as an educational process for health care providers and patients.

Notes

Note

[1] Our informants confront anxiety, depression and loneliness, which are largely connected to an almost complete lack of support from the people surrounding them. Homophobia, HIV-phobia, legal status and ethnic and social class differences are the main obstacles to associate within the Latin American community in Japan (see Castro-Vázquez & Tarui 2006 Castro-Vázquez, G and Tarui, M. 2006.  “Pueblo chico infierno grande”: Community support and HIV/AIDS among HIV-positive Latin Americans in Japan. Ethnicities, 6(1): 5273. [Crossref], [Web of Science ®] [Google Scholar]).

After sero-conversion, informants endure negative attitudes towards life, disembodiment and asexuality. Side-effects from medical treatment on the libido make them use stimulants and Viagra. Also, phallocentrism, fears of infection and discrimination are obstacles to a full sex life. Yet in resuming their sex life they experience a positive attitudinal change and emotional release. And informants are most likely to look for casual sex and/or to engage in prostitution in big cities.

[2] Interviews bring about cathartic effects for the informants. Yet, they are reluctant to participate in research projects because a poor health education background and scepticism about positive outcomes from research. Issues related to citizenship and legality result in unfavourable perceptions of health related research. Informants’ quality of life closely relates to a regime of ‘normality’ and ‘unhealthy life’ prior to sero-conversion. Finally, quality of life for people living with HIV/AIDS needs to be understood in relation to the global consumer culture.

[3] For a detailed description of the use of medical records see Ministry of Health and Welfare (1998 Ministry of Health and Welfare. 1998. The Level of Standard that Japan's Social Security System Has Achieved: White Paper Annual Report on Health and Welfare 1998–1999 [Online] Available at: http://www1.mhlw.go.jp/english/wp_5/vol1/p1c3s1.html [Google Scholar]).

[4] For a detailed discussion about legal structural and cultural factors concerning informed consent, as well as low levels of litigation in post-war Japan, see Feldman (2000 Feldman, E. 2000. The Ritual of Rights in Japan: Law, Society, and Health Policy, Cambridge: Cambridge University Press. [Crossref] [Google Scholar]).

[5] Core hospitals were created in 1997 to provide people living with HIV/AIDS with comprehensive medical treatment. People living with HIV/AIDS can attend any medical facility in the country, but HIV/AIDS specialists are concentrated at core hospitals. For a detailed description see Kōseishō Hoken Iryōkyokuchō (1997 Kōseishō Hoken Iryōkyokuchō (1997) Eizu Chiryō no Chihō Burokku Kyoten Byōin no Seibi nitsuite. [Online] Available at: http://api-net.jfap.or.jp/mhw/document/doc_01_09.htm  [Google Scholar]).

[6] Traditionally, Japan has been considered a non-migration friendly country, because of the creed of racial homogeneity that sustains nationalism and the lowest rates of foreign residents among industrialised nations (Sellek 2001 Sellek, Y. 2001. Migrant Labour in Japan, New York: Palgrave. [Crossref] [Google Scholar]). Current statistics show that only 1.55% of the total population living in Japan are foreigners (Zaidan Hōjin Nyūkankyoku 2005 Zaidan Hōjin Nyūkankyoku. 2005. Zairyū Gaikokujin Tōkei, Tokyo: Zaidan Hōjin Nyūkankyoku.  [Google Scholar]). Besides, the government has denied the existence of minority populations before the Human Rights Committee of the United Nations in 1980, despite the existence of historically well-established, yet by no means fully integrated, populations of Ainu, Burakumin, Chinese, Koreans, and Okinawans (Weiner 1997 Weiner, M (ed.). 1997. Japan's Minorities: The Illusion of Homogeneity, London: Routledge.  [Google Scholar]). However, to cope with the shortages of unskilled workers the Japanese government launched a campaign in 1990 to attract a foreign labour force (Oka 1994 Oka, T. 1994. Prying Open the Door: Foreign Workers in Japan, Washington, DC: Carnegie Endowment for International Peace.  [Google Scholar]). The campaign encompassed three main strategies: one, the amendment of the Immigration Control and Refugee Recognition Act; two, the expansion and diversification of trainee programmes; and three, the granting of work visas to Nikkeijin. The measures largely benefited employers running small-scale enterprisers, the bedrock of the industrial structure, who felt the severest shortages (Yamanaka 1996 Yamanaka, K. 1996. Return migration of Japanese-Brazilians to Japan: The Nikkeijin as ethnic minority and political construct. Diaspora, 5(1): 6597. [Crossref] [Google Scholar]). Currently, the Ministry of Justice acknowledges that of a total of 1,973,747 registered foreigners, in 2004, 286,557 Brazilians and 55,750 Peruvians legally live in the country (Zaidan Hōjin Nyūkankyoku 2005 Zaidan Hōjin Nyūkankyoku. 2005. Zairyū Gaikokujin Tōkei, Tokyo: Zaidan Hōjin Nyūkankyoku.  [Google Scholar]). Koreans (607,419) and Chinese (487,570) are the largest groups of registered foreigners. However, Brazilians have the largest number of foreigners married to a Japanese citizen (82,173), the largest number of long-term residents (144,407) and one of the largest number of permanent residents (52,581). Also, the majority of registered Peruvians are permanent (20,401) and long-term residents (20,779). Statistics do not disclose the number of Nikkeijin, yet Mori (1997 Mori, H. 1997. Immigration Policy and Foreign Workers in Japan, London: Macmillan Press. [Crossref] [Google Scholar]) claims that 90.2% and 6.8% of all Brazilians and Peruvians, respectively, are Nikkeijin. The so-called Nikkeijin phenomenon and the laws that restrict the entry of foreign labour force suggest the revival of the myth of the Japanese social purity and homogeneity (Weiner 1997 Weiner, M (ed.). 1997. Japan's Minorities: The Illusion of Homogeneity, London: Routledge.  [Google Scholar]). Also, Nikkejin have created a stratified of labour market structure of individual workers (Inagami et al . 1992 Inagami, T, Kuwahara, Y and Kokumin, Kinyūkōkō Sōgō kenkyūjo (eds). 1992. Gaikokujin rōdōsha wo senryakukasuru chūshōkigyō, Tokyo: Chūshōkigyō Research Centre.  [Google Scholar]), whose rights are most likely to be violated. Different from Japanese full-time workers, Nikkeijin as well as illegal migrant workers have a subordinate position in the domestic labour market. Employers do not take full responsibility, especially in relation to mandatory health insurance and pension schemes, because more than 60% of Nikkeijin are ‘contract’ workers hired by brokers (Sellek 1997 Sellek, Y. 1997. “Nikkeijin: The phenomenon of return migration”. In Japan's Minorities: The Illusion of Homogeneity, Edited by: Weiner, M. 178210. London: Routledge.  [Google Scholar]). For a detailed description of the Nikkeijin phenomenon see Tsuda (2003 Tsuda, T. 2003. Strangers in the Ethnic Homeland: Japanese Brazilian Return Migration in Transnational Perspective, New York: Columbia University Press. [Crossref] [Google Scholar]), de Carvalho (2003 De Carvalho, D. 2003. Migrants and Identity in Japan and Brazil: The Nikkeijin, London: Routledge-Curzon. [Crossref] [Google Scholar]), and also Hirabayashi et al . (2002 Hirabayashi, L, Kikumura-Yano, A and Hirabayashi, J (eds). 2002. New Worlds, New Lives: Globalization and People of Japanese Descent in the Americas and from Latin America in Japan, Stanford, CA: Stanford University Press.  [Google Scholar]).

[7] For a detailed description see Kōseirōdōshō, Shōgaiintei ni kansuru Kentōkai (1997 Kōseirōdōshō, Shōgaiintei ni kansuru Kentōkai (1997) Hito Meneki Fuzen Uirusu ni yoru Meneki no Kinō no Shōgai ni Kakawaru Shintai Shōgai Nintei ni kansuru Kentō Hōkokusho. [Online] Available at: http://www1.mhlw.go.jp/shingi/s1216-3.html  [Google Scholar]).

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