Debating Human Rights and Prenatal Testing in Japan

Abstract

¹ Disability in Japan is often conflated with the problems of an ageing society, but the disability identity is not one merely associated with the ageing process. As diagnostic science inches our understanding of disability further and further back into ever earlier stages of the individual’s life course, the disability identity can be taken on at the very earliest ages. The use of prenatal testing has an impact on our understanding of disability because prenatal testing and selective abortion challenges our views of disability by asking bluntly, “Is this life worth living?” This article analyses the literature on prenatal screening in Japan by comparing and contrasting its findings with autoethnographic vignettes. The literature presents a complex juxtaposition between law, technology, culture and personal values where two parties claim human rights primacy: the person with a disability and the reproductive woman. The positions of various stakeholders – the medical profession, activist groups, families and individual mothers – demonstrate that prenatal testing poses ethical questions regarding disability and human rights. This analysis also demonstrates the importance of communication at all stages of the process.

Keywords:

• Japan
• disability studies
• human rights
• autoethnography

View correction statement:

Corrigendum

Acknowledgments

The author gratefully acknowledges the intellectual contributions and organisational efforts of the guest editor, Vera Mackie, in bringing these papers together, as well as the anonymous reviewers of the first draft of this manuscript.

Notes

This article was originally published with errors. This version has been corrected. Please see Corrigendum (http://dx.doi.org/10.1080/10357823.2013.821195).

1. This article originated as a conference presentation at the 2011 Annual Meeting of the Association for Asian Studies and draws on material from my book Disability in Japan (Routledge, 2013).

2. Selective abortion can include procedures such as termination due to a threat to the mother’s health or the reduction of embryos in a multi-foetal pregnancy as a result of fertility treatments, but in this article I am solely using it to refer to a termination after an abnormal prenatal testing result.

3. Pre-implantation genetic diagnosis is defined as a prenatal test but is much less common than other sorts of tests as it is used exclusively in the case of known genetic disorders. It is “performed in Japan under much stricter regulations than … in the UK or the US” due to disability protests (Kato, 2009).

4. The Eugenic Protection Law was promulgated in 1947; it replaced the Kokumin Yūsei Hō (Mackie, 2003, p. 165) [of] 1940. The change of name was part of a group of amendments to the Yūsei Hogo Hō passed in 1996.

5. Japan was not the only nation-state that embraced eugenic philosophy; from the late 1800s to the early twentieth century, the US, UK, Australia and some European countries had eugenic policies in place (Jaeger and Bowman, 2005, p. 13), including the “prohibition of marriage”, “institutionalisation or banishment” and “involuntary sterilisation” (Jaeger and Bowman, 2005, p. 35).

6. Nuchal fold measurement – measuring the thickness of an area behind the neck of the foetus due to an accumulation of fluid – via ultrasound is one of the “earliest and the most sensitive and specific markers” related to a range of chromosomal disorders such as trisomies (Geipel et al., 2009, p. 537); swelling in this area can be detected as early as 12 weeks and suggests this and possibly other chromosomal and congenital abnormalities. It is not, however, definitive; Wapner states that this kind of screening is “suggest[ive]” and not “diagnostic” (2008, p. 213). Efficacy increases with time; combined with other markers, tests in the second trimester give more accurate outcomes (Geipel et al., 2009, p. 538).

7. Some of the seminal works in English on Japanese relationships are Takeo Doi’s The Anatomy of Dependence (1981); Merry White’s Perfectly Japanese: Making Families in an Era of Upheaval (2002); and Joy Hendry’s Marriage in Changing Japan: Community and Society (2010).

8. According to Unique, a UK-based support group that specialises in these kinds of disorders, inherited balanced translocations are not so uncommon; about “1 in 500 in the general population … no chromosomal material has been lost or gained and so the vast majority of carriers of a balanced reciprocal translocation do not have any symptoms” (Searle, 2009, p. 35). These individuals may experience problems with infertility, however, and have children who are affected by an unbalanced translocation.

9. Shakespeare and colleagues have created a comprehensive support website entitled ‘AnSWeR’ (Antenatal Screening Website Resource) for people who are considering prenatal testing, undergoing it or deciding whether or not to continue the pregnancy (Shakespeare et al., 2003–06).