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Silence between patients and doctors: the issue of self-determination and amniocentesis in Japan

Abstract

Japan is among the few countries that have passed laws concerning eugenics. Consequently, the practice of selective abortion (abortion of an abnormal foetus) has been publicly debated for the past 35 years. Nevertheless, data show that knowledge in Japan about prenatal diagnosis is anything but common. In my fieldwork (April- June 2006) only 38% of interviewees (13/34) knew or had heard of 'amniocentesis' and 6% knew nothing about it at all. There are many explanations for why people are unaware of prenatal diagnosis. The most crucial factor is that medical doctors do not talk to their patients about it. My interviews with 11 medical doctors revealed that they do not talk about it because they want to respect the principle of patient selfdetermination. In this paper I aim first to introduce and analyse, in the context of Japanese eugenic history and the contemporary notion of the patient-doctor relationship, medical doctors' explanations for not talking to their patients about amniocentesis. Second, I address whether the principle of 'non-intervention' equates to 'self-determination'. Lastly, I suggest possible improvements to the practice of 'self-determination' in Japan.

Notes

  1. 1

    The International Institute for Asian Studies, P.O.Box 9515, 2300 RA Leiden, The Netherlands m.kato@let.leidenuniv.nl

  2. 2

    Gakkô kihon chôsa, The Ministry of Education, Culture, Sport, Science and Technology, http://www.mext.go.jp/b_menu////////////shingi/chukyo/chukyo4/gijiroku/015/07012325/001/001.pdf.

  3. 3

    The second committee meeting of the Ministry of Health and Welfare (MHW) on the use of the blood marker test; 6. http://www1.mhlw.go.jp/shingi/s9812/txt/s1209-1_18.txt.

  4. 4

    Satô, Kôdô. 1999. Shusseizen shindan: Inochi no hinshitukanri e no keishô. Yûhikaku sensho, Tokyo: 68–69.

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    For the history of genetic counselling system in Japan, see: Takebe, Hiraku. 1992, Genetic counselling and informed consent, http://www.eubios.info/HGR/HGRHT.htm. For dilemmas of genetic counselling, see, for example, Kanazawa, Ichiro 1993 Diagnosis and genetic counselling for Huntington’s disease http://eubios.info/IND/INDIK.htm.

  6. 6

    Satô, op. cit. note 4, pp.74-75.

  7. 7

    Ibid

  8. 8

    Tsukamoto, Yasuko. 2005. Iryô no naka no ishi kettei — Shusseizen shindan: Yôsuikensa o ukeru ninpu tachi, Kôchi shobô. Tokyo: 50.

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    Tsukamoto, op. cit. note 8, pp.51.

  10. 10

    The Ministry of Health and Welfare. 1998. http://www.jcoa.gr.jp/content/zuryou.html: 2.

  11. 11

    According to research by the Japanese Red Cross Society, 67 of 92 Red Cross hospitals in Japan are short of medical doctors. Amongst all the departments, Ob/Gyn and Paediatrics have the most serious problems. (Seikyo Shimbun, 29 May, 2006)

  12. 12

    Takebe, Hiraku. 2002. Hitogenomu ni miru kôshi mondai. In Kagakugijutsu to kôkyôsei, by Sasaki Tsuyoshi & Kim Tae Chang. Tokyo daigaku shuppankai: 238.

  13. 13

    Tsukamoto, op. cit. note 8, pp.45.

  14. 14

    The first sentence of the Eugenic Protection Law.

  15. 15

    The Asahi Shimbun. 14 February 1996. Yûseihogohôkaisei tashiba no sa. Tokyo.

  16. 16

    For the English version of the law, see: Kato, Masae. 2005. Women’s rights?: Social movements, abortion and eugenics in modern Japan. PhD dissertation at Leiden University: 290-291. For the debate about the law, see Ashino, Yuriko. Reproductive health rights: The present situation of Japan and its problems. http://wom-jp.org/j/REPORT/repro.html.

  17. 17

    Hanazaki, Kôhei and Takashi Kawamoto. Jikoketteiken to wa nanika. Gendai shisô 1998; 26–8: 44.

  18. 18

    Ibid

  19. 19

    Code, L. 2000. The prevention of autonomy and the subjection of women: Discourse of social advocacy at century’s end. In Relational autonomy: Feminist perspectives on autonomy, agency and the social self. C. Mackenzie and N. Stoljar, eds. Oxford University Press. New York and Oxford: 6.

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  20. 20

    Ibid

  21. 21

    Ibid

  22. 22

    On the transformation of the concept of informed consent, see R.R. Faden and T.L. Beauchamp. Informed consent — Kanja no sentaku. Misuzu shobô 1994; pp. 4–5, 53 & 68. On the Nuremberg Code, see Code, op. cit. note 19, pp. 77-78.

  23. 23

    Dodds, S. 2000. Choice and control in feminist bioethics. In Relational autonomy: Feminist perspectives on autonomy, agency and the social self. C. Mackenzie and N. Stoljar, eds. Oxford University Press, New York and Oxford: 216.

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  24. 24

    Ibid

  25. 25

    Ibid

  26. 26

    Faden and Beauchamp, op. cit. note 22, pp.186-218.

  27. 27

    During his lecture at The International Institute for Asian Studies (IIAS), the Netherlands, 5 September 2006.

  28. 28

    Takebe, op. cit. note 12, p.221.

  29. 29

    Watanabe Atsushi and Takashi Shimada. Igakubugakusei o taishô to shita rinshôiden ni kansuru rikaidochôsa — Igakubu ni okeru rinshôidenkyôiku no hitsuyôsei. Igaku kyôiku 2005; 36 (4): 235. Takebe, op. cit. note 12, p.231.

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  30. 30

    Arimori, Naoko. Idenkango to wa? Josan Zasshi 2005; 59 (2): 117–122.

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  31. 31

    MHW, 21 July, 1999. http://homepage2.nifty.com/ganesh/marker.html.

  32. 32

    The society was established in 1949, and currently has 15,900 members. Members are not necessarily medical doctors. As a society with professionals, they have influence on the content of guidelines, policies and sometimes laws in the field of gynaecology and obstetrics.

  33. 33

    http://www1.mhlw.go.jp/houdou/1107/h0721-1_18.html. Translated into English by the author.

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Correspondence to Masae Kato.

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Kato, M. Silence between patients and doctors: the issue of self-determination and amniocentesis in Japan. Life Sci Soc Policy 3, 28 (2007). https://doi.org/10.1186/1746-5354-3-3-28

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Keywords

  • Pregnant Woman
  • Genetic Counselling
  • Down Syndrome
  • Prenatal Diagnosis
  • Medical Doctor