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ICON: Journal of the International Committee for the History of Technology 26, no 2 (2021): 62-80

Women’s decision-making and theirexperiences in the changing socio-technicalsystem of prenatal testing in Japan,
1980s to 2010s
Azumi Tsuge
This article analyzes the notions of woman’s body, reproduction, and choices regarding
prenatal testing over the last three decades in Japan from interviews with women
about their experiences of pregnancy and prenatal testing. First, the historicalbackground of abortion and prenatal testing in Japan is described focusing on the
decriminalization of abortion under the 1948 eugenic policy, subsequent disabledliberation movement against the policy, and how it clashed with women’s liberation
movement for reproductive choice. Then the article shows how women’s attitudes
towards prenatal testing have changed over time referring to the interview data,
and analyzes factors affecting their decisions regarding whether to take a prenatal
test. As the development of testing technology plays a crucial part, and it is important
to grasp the interrelationship between technological development, social changes andindividual women’s attitudes and their families’ roles/norms in their decisionmaking, the analysis regards the complex co-development of technological, political,
and cultural factors as a dynamic socio-technical system of prenatal testing in Japan.
By doing so, it reveals the implicit politics revolving around the imagery of “mothers
giving birth to healthy babies,” and the ambivalent positioning of prenatal testing.
Introduction
Since the first report of the use of amniotic fluid for prenatal diagnosis ofchromosomal abnormalities in 1966,1 it has been used worldwide for the diagnosesof hereditary diseases or aneuploidies of fetus (one or more extra or missing
chromosomes—i.e. the cause of Down syndrome).2 However, decisions surrounding
prenatal testing inherently involve ethical questions of “what kind of life is worth
living and who is entitled to decide.”3 Indeed, a decline in the rate of live births of1
2

3

Steele et al., “Chromosome Analysis,” 383–5.
The most common fetal aneuploidies associated with an additional chromosome are
Down syndrome (trisomy 21), Edwards syndrome (trisomy 18), and Patau syndrome(trisomy 13). (Fundukian, Gale Encyclopedia, 310.)
Press and Browner, “Why Women Say Yes,” 979.

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babies with Down syndrome since it began has been reported,4 and thus disability
rights activists show a clear distrust of such technology while academic discussions
have evolved around its eugenic aspects.5 This has not, however, eased women’s
dilemmas about taking the test or their experiences and interpretations of choices
they have made. 6 Women who undergo amniocentesis are reported to be tentative
about the test until the results come out.7 Hence the impression that women/couples
deciding to take the test are “submitted to the discipline of a new reproductive
technology in order to reap its biomedical benefits as moral pioneers.”8
From the viewpoint of social history of technology, historian Ruth SchwartzCowan points out the importance of considering prenatal diagnosis as asocio-technical system since “each part of the system has its own scientific history
and its own inseparable social history and . . . those separate histories have transpiredin many different countries, under many different social, economic, and scientificconditions.”9 Similarly, feminist medical anthropologist Rayna Rapp states thatwomen’s knowledge of prenatal testing is “both individually and socially mediatedby differences in class position and scientific literacy and racial-ethnic and religious
backgrounds. It is also crosscut by individual, familial, and community histories withreproduction and disability.”10 Medical Anthropologist Margaret Lock describes
medicalization of reproductive technology and the new genetics as something that“one must read across cultural domains in any given setting in order to produce acontextualized analysis of reproductive behavior.”11
Given these insights, this article will describe the socio-technical system ofprenatal testing in Japan, to determine factors which have significant impacts on
the decision of whether or not to take a prenatal test and how these have changed
over time.12 To do this, the article begins with a brief history of abortion and prenatal
testing in Japan that illustrates the cultural and political contexts of the use of
prenatal testing in Japan. Then, using data extracted from interviews conducted
between 1991 and 2016, it examines cases of women who actually made decisions
4
5
6
7
8
9
10
11
12

Egan et al., “Demographic Differences”; Lin et al., “Impact of Down Syndrome.”
Parens and Asch, Prenatal Testing and Disability Rights.
Some Dutch studies show a similar concern about NIPT. For example van Schendel
et al., “What do Parents of Children,” 525–7.
Rothman, Tentative Pregnancy.
Rapp, Testing Women, 306.
Cowan, “Women’s Roles,” 35.
Rapp, Testing Women, 310.
Lock, Eliminating Stigmatization, 257.
Vassy et al. points out that the sociotechnical settings which vary from country to country
affected the interactions during the consultations they observed and thus impacted thedecision of whether or not to screen. (Vassy et al., “From policy making,” 67.)

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about taking the test. This testimony shows the changing narratives of first-handexperiences which are personal, sensitive and often disconcerting. By describing thehistorical development of the use of this technology based on official records, publicdebates, and also personal experiences, this article attempts to provide acomprehensive description of a dynamic socio-technical system. In so doing, it
reveals numerous factors affecting the decision-making by pregnant women: (1) theirwill and how that is viewed by society; (2) their level of literacy; (3) family
relationships and the norms/values/beliefs embedded in such relationships; (4) thelaws and regulations; (5) guidelines and recommendations; (6) the political climate
regarding abortion and prenatal testing; (7) cultural and normative perceptions offamilies, mothers and children, and disabilities; and (8) the rapidly developing
technology itself.
A Brief History of Cultural and Political Aspects of Prenatal Testingin JapanJapan is known as a country that has long allowed abortions to be conducted, but infact abortion has been illegal there since the late nineteenth century. Japan’s firstmodern penal code (1880) criminalized abortion. This restriction originated from an
abortion ban at the end of the Edo period (circa 1603 to 1867), but the notion of
criminalization is a clear influence from Europe, in particular, France. Although
there was a discussion of the possibility of abandoning the ban on abortion in thelate nineteenth century, German influence on Japanese politics became increasingly
stronger at the time and the law was made even stricter in 1907 when it was revised.13
There was a birth control movement in Japan before the Second World War, but
the penal code was further extended to include contraception. Meanwhile, Japan’s
National Eugenics Law enacted in 1940 enforced the sterilization of disabled people,
while encouraging respected citizens to raise healthy children.
In the post-war period, the increasing number of back-alley abortions thatcaused health damage to women became a serious social issue in Japan. Thus, in
1948, the Eugenic Protection Law was enacted to require abortion in cases ofpregnancies with health risks for the mother; pregnancies that gave rise to hereditary
and/or mental illnesses in the offspring; and pregnancies that resulted from rape.
The law was re-revised in 1949 to address the rapidly growing population: abortions
became legal there “if the continuation of pregnancy is likely to seriously harm themother’s health” for not only “physical” but also “economic reasons.”14 As a result,over one million induced abortions under the couples’ consent were conducted
13
14

Nie, “Legal regulation,” 95–6.
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annually between 1953 and 1961.15 In the 1950s, an anti-abortion lobbying movement
led by a new Shintoist group, Seicho-no-Ie, along with several politicians, demanded
the removal of the economic conditions clause,16 but the Nihon Bosei Hogoi Kyokai( Japan Association of Obstetricians and Gynecology) and Nihon Ishikai ( Japan
Medical Association: JMA), together with women’s organizations and various
activists protested against this proposal.17 Similar attempts by pronatalists wererepeated in the 1970s and 1980s, but the economic conditions clause remained.
In 1970, JMA requested the insertion of a so-called “fetus clause” which would
enable abortions if prenatal testing revealed severe fetal anomalies—so nothereditary or mental illness. As it implied that abortion was a legitimate option forcases of fetal malformations, this proposal was opposed by groups advocating
disability rights. To the government, which intended to implement a policy toprevent the births of so-called “unfortunate children”—the children who sufferedfrom severe diseases or disabilities, Aoi Shiba no Kai, a self-help group for people
with cerebral palsy, asserted that any such policy would discourage people fromhaving children with severe diseases and/or disabilities, and such was an explicit actof discrimination. Subsequently, the policy was implemented but soon suspended.18
At the time, the second wave feminist movement known as “Woman Lib” wasfighting for women’s reproductive freedom, but such an assertion clashed with thefundamental allegations made by disability rights advocates. The conflicting claimsby the two parties cultivated a rich dialogue regarding reproductive rights anddisability rights in Japan, through a painstaking engagement in the controversy, inwhich the presence of women with disabilities in Aoi Shiba no Kai was crucial.19
They both protested against the Eugenic Protection Law which allowed sterilization
without consent upon a physician’s application. More than 16,000 people were
forcibly sterilized under this law between 1949 and 1996, of which approximately 70
per cent were women.20 As the law’s implication was that people with mental/

15

16
17
18
19
20

The Japanese Eugenic Protection Law required the husband’s consent for abortion of
married women, and this remained unchanged when the Law was revised in 1996. In
2021, there is an on-going campaign calling for the deletion of the spousal consent
requirement. (Ilgin Yorulmaz, “My body, my choice: Women in Japan all for end toabortion law’s ‘abusive’ male consent requirement,” Number 1 Shimbun [The Foreign
Correspondents’ Club of Japan], October 2021; Japanese Minister of Health andLabor, Eugenic Protection Statistical Report, and Maternal Body Protection
Statistical Report.
LaFleur, Liquid Life.
Sugano, “Phase of Selective Abortion.”
Tsuchiya, “Historical analysis.”
Nikaido, “Transformation in Awareness.”
Yuseishujutsu-ni Shazai-wo Motomeru-Kai, Yuseihogoho-ga Okashita Tsumi.

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intellectual disabilities, hereditary or not, must not have children,21 women activists
with disabilities appealed to their own reproductive choice. “Woman Lib” activists
who agreed with them jointly fought in a trial to abolish the law while protesting
against the criminalization of abortion.
The demand of these activists was finally realized in 1996 when the law was
renamed “the Maternal Protection Law,” with all clauses related to eugenic ideology
deleted, and its objectives shifted to the protection of the health of expecting
mothers. However, the issue of reproductive rights, or more specifically, the abolitionof the Criminal Abortion Law in the Penal Code that activists had been demanding
was not acted on.
The introduction of amniocentesis22 for prenatal diagnosis which began in theearly 1970s occurred during the above controversies, and perhaps due to this, theconduct rate of prenatal testing in Japan was notably low as compared to countries
such as the U.S.A.,23 the U.K.24 and France.25
In 1994, the use of maternal serum screening (MSS) for testing the likelinessof the fetus having birth defects such as Down syndrome, neural tube defects(NTDs), and trisomy 18, by taking a blood sample from the expecting mother andexamining the levels of specific substances (markers) contained in the sample
became available in Japan.26 Its use increased gradually till 1998, and although therate of its conduct was not so significant (up to one per cent of pregnant women),the easiness of taking the test, which implied the possibility of its use as a mass
screening test, along with reported confusion by pregnant women due to little
information given to them prior to the test gave rise to concerns among the public.
Thus the Japan Down Syndrome Society expressed their concern that this methodof prenatal testing might eliminate disabled people from society, and mass media
criticized its use as “inochi no senbetsu” (selection of life).27 These concerns materialized into a view of the government as encouraging discrimination against the
21

22
23
24
25
26
27

DPI Women’s Network Japan. “A Survey on Living Difficulties of Women with Disabilities
in A Call for Provisions on Women with Disabilities in a Law to Prohibit Discrimination
Based on Disability, May 11, 2012, http://dpiwomennet.choumusubi.com/english.pdf.
This issue is now regarded as an infringement of human rights and a partial reparation
is made to a number of victims of compulsory sterilization before 1996, but they arerequesting the apology by the nation.
Toshimitsu, Juseiran-Shindan to Shusseimae-Shindan, 68; Hogan, “Set Adrift,” 65–6.
Wald et al., “Antenatal Maternal Screening,” 394.
National Health Service, “Fatal Anomaly Screening Programme,” accessed in April 10,
2018, http://fetalanomaly.screening.nhs.uk/.
Vassy, “From a Genetic Innovation.”
Sago et al., “Nationwide Demonstration Project,” 1.
Sakai, Reportage Shusshouzen Shindan.

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disabled, thus, the Ministry of Health and Welfare set up the Expert Committee
on Prenatal Diagnosis. In 1999, the expert committee presented their “View on
Prenatal Marker Screening” that functioned as a guideline for the clinical practiceof prenatal testing. It clearly stated that “we must understand that practicing prenatal
testing is not only a medical issue but also an ethical, social, and psychological issue.
Therefore, we should listen to the opinions and concerns of a variety of parties before
we make a conclusion,” which they did, and concluded that obstetricians were notto actively give information about MSS, that doctors should not recommend it topregnant women, and that companies should not advertise the test for theircommercial profit, to avoid further confusion resulting from low literacy of pregnant
women and a wider concern about the possibility of mass screening. To reach thisdecision, the committee needed to consider various complex issues such as thepossibility of information provision about prenatal testing leading to the obstetrician
being sued for “wrongful birth,” but it came to the decision that its recommendations
were fair given that adequate information was provided by the obstetrician uponrequest by the pregnant woman and that the genetic counseling system was
improved. The number of pregnant women taking the MSS dropped immediately
after the release of “View on Prenatal Marker Screening” in 1999 but gradually
increased and surpassed the initial number.
In 2011, noninvasive prenatal testing (NIPT) for detection of fetal aneuploidies
became available, which led to yet another controversy in Japan.28 As NIPT was easierand safer than other tests available, while exhibiting high sensitivity and specificity(enabling a reliable diagnosis—although its results are not definitive), mass media
pointed to the danger of women casually taking NIPT and opting easily for
termination.29 To respond to such a public concern, the Japan Society of Obstetrics
and Gynecology ( JSOG) published a guideline for the use of NIPT in 2013.30 It
stated that NIPT should not be widely performed in general obstetric clinics until
an appropriate system of genetic counseling was established. In addition, the society
stipulated that the test “should only be carried out on pregnant women with increased
risks for fetal aneuploidy” and its use for mass screening should be strictly prohibited.31 Thereupon NIPT was introduced in Japan in 2013, and became available in
28
29

30
31

Sago et al., “Nationwide Demonstration Project,” 5.
The Japanese Maternal Body Protection Law permits abortions to protect pregnant
women against health problems which include those caused by economic reasons, but
not for fetal abnormalities.
Japan Society of Obstetrics and Gynecology ( JSOG) guideline for NIPT clinicalpractice, 2013, http://www.jsog.or.jp/news/pdf/guidelineForNIPT_20130309.pdf.
JSOG, “Botaiketsu wo mochiita atarashii shusseimae-idengakuteki-kensa ni kansuru
shishin” [The guideline for new prenatal genetic test by maternal serum screening],
2013, quoted English translation from Sago et al., “Nationwide Demonstration
Project,” 2.

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institutions certified by the Japanese Association of Medical Sciences. This kept therate of prenatal testing low,32 which in 2016 was approximately seven per cent among
total pregnant women and 25 per cent among those in advanced maternal ages. The
low rate is also attributable to high costs, as the costs of NIPT plus amniocentesis
with genetic counseling in the case of a positive result is relatively high and are notcovered by the public health insurance. Nevertheless, the rate of testing in Japan
doubled since 2008.
Another problem became prominent in 2016: a supposed increase in the conduct
of NIPT in non-obstetric clinics, which were not certified and did not provide
genetic counseling.33 Many young couples started to visit such clinics after seeing
advertisements online. The clinics offered NIPT, which tells the sex of the baby aswell as information about a hundred or so disorders, and without needing to take acourse of counseling. Thus, in 2019, the JSOG attempted to update its guidelines.
Meanwhile, the Ministry of Health, Welfare and Labor organized an expert
committee to discuss the requirements for the appropriate practice of NIPT. Basedon the committee’s report, a new system for the conduct of NIPT started in 2021,
in which a doctor or a genetic counsellor provides information to pregnant women
about rearing disabled children and about available social support, along withinformation about abortion.34
Women’s Experiences of Decision-Making Regarding Prenatal Testing
In order to understand transitions in the socio-technical system of prenatal testingin Japan, it is important to refer not just to publicly available sources, but also thenarratives of pregnant women. Thus, this section presents interviews of women who
went through decision-making about prenatal testing in Japan from 1980s to 2010s.
Their narratives are extracted from semi-structured interviews conducted in 1991
(the 1991 study)35, in 2003 and 2004 (the 2003–4 study)36, and in 2013 to 2016 (the
32
33

34

35
36

Sasaki et al., “Current status.”
Japanese Ministry of Health, Labor, and Welfare, and Deloitte Touche Tohmatsu
LLC, Report of survey on actual situation of prenatal testing, a program of support
facilitation for children and childrearing, 2020,
https://www.mhlw.go.jp/content/11908000/000651251.pdf.
For example, they provide information about parent groups and cases of people with
Down’s syndrome living self-sufficiently in group homes with welfare/salary incomes.
There have been laws and regulations to ensure disability rights and social welfare, but the
Act on Comprehensive Support for Persons with Disabilities specifically included whenrevised in 2020, the public supports for self-sufficient lives of people with disabilities.
Tsuge, “Shusshoumae Shindan” [Prenatal diagnosis], 45-78.
Tsuge, Sugano, and Ishiguro, Ninshin [Pregnancy].

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2013–6 study)37. Their narratives supplement the above historical description. The
anonymous interviewees were all female with male partners. They were between
their late twenties and early forties when they became pregnant, and all completed
secondary or higher education. The language used was Japanese.
Interviews in the 1991 Study
This study looked at eight women who considered having genetic counseling or
prenatal testing. Four of them were advanced in age but did not take prenatal genetic
testing. They all had routine ultrasounds. Three out of four mothers of previous
children with genetic/congenital disorders decided to take the test in the late 1980s
to 1991. Akemi and Eriko are in this category, and thus can be described as having
risks associated with their clinical histories.
The first, Akemi, lives in a suburban city with her husband and two children.
In the early 1980s, when she was in her late twenties, she gave birth to her first baby
who had minor malformations of fingers and toes. When the doctor told her andher husband that some fingers and toes of the newborn were absent, Akemi related,“I was astounded, I pitied him, and I was sorry that I couldn’t give a proper birth tohim. My mother wondered if I had too much coffee or took painkillers. Later I
understood why she did so—it was her apology to my husband and his parents. But
it hit me the hardest.”38 Although Akemi’s parents-in-law accepted their grandson’s
anomalies relatively quickly, her parents had a greater difficulty in doing so. Although
their attitudes changed gradually, and Akemi grew better able to deal with prejudice,she became anxious when she was pregnant again in the late 1980s.
Her second pregnancy raised different questions: “I love my [first] son truly
and I thank him for being born. . . But I’m painfully aware of the discrimination
against the socially vulnerable. [So, I was] more reluctant to have a baby withdisabilities when I was pregnant again.” When she expressed her concerns to thedoctor during mid-pregnancy, he conducted a detailed ultrasound scan. It wastraumatizing for her as it lasted for two hours, and was in the presence of residents
and students as it was a university hospital. The doctor said the test showed no signof anomalies but mentioned a slow development of the fetus. This made her worry
throughout the pregnancy, but the baby had no disabilities when it was born.
Looking back on her experience, she felt she grew stronger through the experienceof raising children with the help of surrounding people, including her parents,
parents-in-law, the older child’s pediatrician, elementary school teachers and a parent
group for children with malformation of limbs.
37
38

Unpublished data.
Akemi, interview by author, April 12, 1991, a city in northern Japan, a face-to-faceinterview.

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The second interviewee, Eriko, gave birth to a child with Down’s syndrome inthe late 1980s, when she was in her late twenties.39 Her parents and the parents-inlaw were both supportive. At the time of her interview, she was working withanother mother who also had a child with Down’s syndrome to start a support groupin Tokyo for children like theirs. When she became pregnant again, her child’s
pediatrician recommended genetic counseling and explained amniocentesis briefly.
As Eriko recalls,
The doctor said that the mother was to make the final decision. . . . I [felt] thefetus was alive when I heard the heartbeat of my first baby . . . [Therefore,] I
was very scared of a needle in my belly [for amniocentesis] because it mightpierce my [second] baby’s head. When I told my husband about the genetic
counseling, I stressed I couldn’t have a termination after listening to theheartbeat. . . . I didn’t care if the second child had a problem, and I assured
him that it wouldn’t. . . . My husband agreed so I didn’t visit the hospital.
However, she emphasized: “I think [taking amniocentesis] is really the parent’s
decision . . . as it is no good if parents . . . can’t be positive about raising a [handicapped] child. It would be a pity for the child to be born in such a family. . . .
Whether the child lives happily or not depends on the parents.”
At the time this study was conducted, the term “fetus diagnosis” had started toappear sporadically in the mass media. In this sense, both Akemi and Eriko weretypical examples as their reasons for considering a fetus diagnosis were the clinicalhistories of genetic/congenital disorders in their previous children. However, theirexperiences were strikingly different. Akemi’s decision was clearly influenced by atypical old norm of a daughter-in-law needing to bear healthy children for theextended family of the husband, which was expressed as Akemi’s mother’s concern.
Having a child with a disability was considered “abnormal” and could potentiallystigmatize the parents as well as the extended family.40 Also, people had often been
explicitly rude towards the visibly disabled, which has become less noticeable incities but remains in some rural regions.
Levels of literacy were also different in the two cases. Unlike Akemi’s case,
Eriko received sufficient information about genetic counseling and amniocentesis
from the pediatrician of Eriko’s child with Down syndrome, which allowed her tomake a decision by herself. Eriko’s previous experience with a disabled child was
positive, and she had found a public health nurse who visited her and advised her
about raising a child with disabilities very helpful, and the nurse connected her to3940

Eriko, interview by author, May 24, 1991, a suburban city in Tokyo, a face-to-face interview.
Lock, Eliminating Stigmatization, 258–61.

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another mother in a similar circumstance. Such a supportive environment was notparticularly common, however, as, there still were doctors who had prejudiced
notions of patients with disabilities.
Interviews in the 2003–4 StudyIn this study, twenty-six women were interviewed, of which twenty-one did nothave prenatal testing, while all had routine ultrasound.41 One had the MSS, two hadamniocentesis, and two had detailed ultrasound screenings. The cases of threeinterviewees follow: Fumiyo, who had the MSS, Haruka, who had amniocentesis
overseas because she thought her doctor in Japan was reluctant toward prenatal
testing, and Jun, who decided to take a detailed ultrasound screening to see if she
had a legitimate reason for terminating her pregnancy.
Fumiyo, a fulltime worker in Tokyo, gave birth to her third child when she wasthirty-five, around the year 2000.42 Her doctor provided information about the MSS
test43 because of her age and recommended that she make a decision by discussing
the issue with her husband and her parents. However, there was another importantconsideration for Fumiyo: “We were more worried about our older children because
they would have to look after their handicapped sibling for many years to come. . .
My mother said it was our choice, but we had to think about our elder sons.” The
MSS test showed a lower-than-average probability of the fetus having abnormalities
compared to others in her age group, which made her deeply relieved, but she
expressed how she continued to be bothered by a question of what she would havedone “if the result was a bad one.”The second interviewee, Haruka is a homemaker and lived overseas due to herhusband’s work for several years. While visiting Japan, she realized she was pregnant,so she visited a local Japanese doctor. She was thirty-four years old. She recalled herconcerns: “Because it was an advanced-age pregnancy,44 I was extremely worried
about its risks. So, I told the doctor that I wanted to have amniocentesis. Then hesaid, ‘but you have decided to give birth, haven’t you?’ which made me realize that
he had a negative attitude to the prenatal testing.”45 As a result, she hadamniocentesis after returning to her country of residence. The result did not indicate
41
42
43
44

45

For more details, Tsuge, Sugano, and Ishiguro, Ninshin, 252–5.
Fumiyo, interview by author, July 18, 2003, Tokyo, a face-to-face interview. Ivry
reported a similar interview with a Japanese woman (Ivry, Embodying Culture).
At the time, the triple marker screening test which examined three substances(markers) was offered as an MSS test.
In the country she was residing, the cost of prenatal testing was subsidized for those
aged 34 or over. In Japan, the advanced-age pregnancy normally refers to pregnancy at
the age of 35 or over, and the cost of prenatal testing is not subsidized.
Haruka, interview by Sugano and Ishiguro, 4 August 2003, Tokyo metropolitan area.

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abnormalities, but if it did, she thought that she might have terminated thepregnancy, as the awareness of an advanced-age pregnancy consumed her badly.
Jun, the third interviewee, was asked to give up her dream of becoming a chef
when she was pregnant. Because, as she remarked, some people in Japanese society
think that “having an abortion is a better choice than giving birth to a baby withabnormalities,” whereas having an abortion for the mother to achieve her dream isconsidered “selfish,” she had a test to see if fetal deformity would be detected.46 If
so, her preference to terminate the pregnancy would be seen socially as somewhat
legitimate.
Interviews in the 2013–6 Study
The last study, which ran between 2013 and 2016, included interviewing nine womenand a couple, who had or were considering prenatal testing. Two women had had
NIPT and three women had had amniocentesis.
Mika lived in the United States with her Asian-American husband andconceived for the first time naturally at the age of forty in the early 2010s. Her doctor
discussed ordinary prenatal testing with her, and said it was her choice and suggested
that she discuss her options with her partner. She did so and decided not to havethe test. However, when she had ultrasound scan during her second trimester, thediagnostic medical sonographer strongly recommended that she have NIPT becauseof her age, or at least a genetic counseling. As a result, she and her husband had acounseling session, as it was covered by her American health insurance. They thought
the fetus was fine at first, but grew less confident after the counseling, as they learned
everybody had a chance of having a baby with disabilities. As Mika recalled, “Myhusband told me that he didn’t have the confidence to raise a child with disabilities.
I insisted though that I would give birth even if a chromosomal abnormality was
found. . . . But I’m not sure if I really would have. I doubt myself. I don’t think I
could make my mind at that time.” Consequently, Mika had NIPT. The result
showed nothing alarming.
When Nao was pregnant with her first baby, she was aware of her advancedage pregnancy and knew a little about prenatal testing, but the doctor provided no
information. At the twenty-sixth week, however, trisomy 18 [Edward’s Syndrome]
was detected by amniocentesis after detailed ultrasound, but by then termination
was no longer a legal option. She continued her pregnancy and had the baby, but it
died soon after the delivery. This experience led Nao and her husband to join a selfsupport group for trisomy 18.47 Nao then conceived again in her late thirties throughin vitro fertilization. As she recalled, “Couples whose children had trisomy 18 in the
46
47Jun, interview by Ishiguro and author, 13 September 2003, a suburban city in Tokyo.
They organize photographic exhibitions of children with disabilities to connectfamilies and to promote the understanding of trisomy 18.

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group [made me] not mind having a child with a chromosomal malformation. I also
thought families of children with incurable diseases didn’t look unhappy. So, I
become less worried about raising [such] a child.”48 As she was determined to havethe new baby, regardless of its genetic health, she only had a detailed ultrasoundscan. She gave birth to a girl when she was forty, and her daughter is growing well.
An Analysis of Study Results
From a brief comparison of above cases, some changes are observable regarding
decision-making about taking prenatal testing over time. First, the major reason fortaking prenatal tests has shifted from “risks associated with clinical history” of thepregnant woman to “risks associated with maternal age.” This agrees with researchmore generally.49 In 1991, four women who were pregnant at an advanced age (35 orover) had a genetic counseling, gathered information about raising children withdisabilities, or discussed with the husband and/or parents. However, they did nottake a prenatal test. Likewise, in the 2003–4 study, seven out of twenty-six
interviewees were aged 35 or over, but only two had prenatal testing. There also were
one woman aged 34 at the time of the childbirth who had amniocentesis and anotherof the same age who had three-dimensional sonography, both of whom had otherreasons in addition to their age, for wanting to take a prenatal test. Yet in the same
study, Haruka actively chose to have prenatal testing, and data from the 2013–6 study
indicate that taking prenatal testing due to advanced age was becoming common.
This agrees with available statistical data: in 1971, the “experience of giving birth toa child with chromosomal anomaly or other malformation” was the most common
reason to take amniocentesis, but by 1983, it was the “maternal age of thirty-five andover,” and this is consistent with the increase in advanced-age pregnancies.50
There was also a significant change in information provision about prenatal
testing by doctors. In the 1990s, the importance of informed consent was alreadyknown, but there still were doctors reluctant to tell patients medical facts directly,
believing that it was better for the patient not to have everything disclosed. Also,
skills of information provision by the doctors and genetic counselors varied greatly.
The Ministry of Health and Welfare’s guideline of 1999, made doctors’ role in
information provision about prenatal testing passive, but how and what information
48
49
50

Nao, interview by author, 23 March 2016, a city in California, U.S.A.
Suzumori et al., Genetic Amniocentesis, 565–7.
The average age of mothers having their first child in Japan has increased from 25.7
years old in 1975 to 30.7 years old in 2015 according to the Japanese Ministry of Healthand Labor, “The Vital Statistics 2015”; National Institute of Population and Social
Security Research, “The Japanese National Fertility Survey,” 1990, 2005, and 2015,
http://www.ipss.go.jp/.

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was passed on to pregnant women varied tremendously in the 2003–4 study, fromhanding out a leaflet to informing in detail to women over certain age. Pregnant
women under 35 either knew nothing about the tests or interpreted the absence of
information as evidence of “the doctor’s decision that the test was not necessary.” 51
On the contrary, those who received information correctly understood that thedoctor was not recommending the test, and they were to make the decision withthe partner (and the parents). By the time NIPT became available in 2013, information
infrastructure no longer assumed such a traditional doctor-patient relationship, as
women/couples got information online and made decisions before they madeappointments for the genetic counseling required for NIPT.
Another change is in how the risks of prenatal testing were perceived. In 1991,
Eriko explained her reason for not taking the test as the fear of the needle piecing
the fetus. The four women who did not take prenatal testing despite their advanced
ages also worried about the danger of the test. In the 2003–4 study, too, someinterviewees were anxious about possible damages to the fetus or the risk of
miscarriage. Therefore, the appearance of NIPT which can be used from the tenthweek of pregnancy (earlier than other tests), and which does not harm the fetus,
made prenatal testing easier to agree to, despite the need to conduct a definitive
diagnosis in the case of a positive result.
Decision-Making regarding Prenatal Testing
Among the women studied here, there were women who were the principal
decision-makers themselves,52 such as Akemi and Eriko in the 1991 study. These
women made the difficult decision by themselves, with some assistance from theirhusbands. Later, in 2003–4, however, Fumiyo was explicitly advised by the doctor toconsult her partner and parents, which indicates the importance of the husband, as
well as the couple’s extended families. However, in the 2013–6 study, it was quite
typical, as illustrated by Mika and Nao, that the decision was made with the help of
their partners and the active pursuit of additional information. Here, the guidelines
of NIPT requiring genetic counseling of the wife and the husband may have
impacted on the presence of the expecting father in the decision-making. In
addition, the style of decision-making seems to have become more varied over time,
involving more stakeholders such as the genetic counselor, friends, and self-support
groups as in Nao’s case.
The involvement of extended families (often directly) in the decision-making
about prenatal testing may be one of the characteristic features of Japanese cases. In
51
52

Tsuge et al., Ninshin, 507–9.
Kato, “Women’s Rights?”

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addition to the episodes described above, other data from the studies also show thatdecisions have often been made with direct or indirect inputs of the parents of thecouple. This remained unchanged from 1991 to 2003–4, and is consistent with aquantitative survey which indicates that the parents and siblings of the expecting
couple are generally also involved in decision-making about prenatal testing.53
Discussing such matters with the couple’s parents and siblings is not uncommon in
Japan as the decisions inevitably involve the consideration of caregiving expectations
within the family from daily care work and mobility assistance, to basic medicalcare, and even educational/vocational support, such as obtaining appropriate
education supplements and choosing appropriate schools. Indeed, as one of theinterviewees in the 2003–4 study opined, extended families were involved because“the child being born would affect the people other than the parents.” It is worth
noting that such an attitude has not changed and is still observable in the 2010s
although the average number of children born to one couple has decreased, and thenumber of couples living with their parents has decreased also.
Women’s Reasons for Prenatal Testing
There was an observable shift in how women described their reasons for having
prenatal testing done. In 1991 and in 2003–4, several interviewees explained that thetest was for the child to be born, or for the family’s older child(ren). Furthermore,in two cases in the 1991 study, the mother’s apologies to their children withdisabilities were expressed. However, the studies show that the rhetoric of “for thechild” was gradually replaced by more direct expressions such as “because we lackconfidence in raising children with disabilities.”54 In that sense, the decision toterminate pregnancy is recognized as the parents’ choice, but it is not always openly
accepted, especially if a termination is considered in order for the parents to pursue
their desired lives or lifestyles, as shown in the case of Jun in the 2003–4 study.
The intricate and dynamic socio-technical system of prenatal testing in Japanshows changes in women’s attitudes, public regulations and medical recommendations, but throughout the notion persists of the family/extended family as the unitof community which is responsible for various care work if a child is born withdisabilities. Also unchanged overtime is women’s feelings of discomfort or regret
for considering to take prenatal testing. As it is a technology that suggests thelikelihood of a baby born with abnormalities, it is inevitably linked to the desire tohave “healthy” babies. This implication can consume some women badly, like Fumiyo
and Mika, but this experience of guilt does not seem to be addressed properly inthe current system of prenatal testing.
53
54

Nakagomi and Yokoo, “Analysis of Decision Making.”
Nao, interview.

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Conclusion
This paper described the modern history of prenatal testing in Japan, from the 1980’s
to 2010’s, to show the changing technological, political, cultural/familial aspects ofdecision-making about prenatal testing. It has become clear that from theintroduction of amniocentesis in the 1970’s, the beginning of prenatal testing inJapan, testing of abnormalities in fetus has been repeatedly criticized by the media
and activists. These criticisms resulted in the government working with medical
experts to implement careful policies. Unfortunately, their policies were vague andconfusing for actual clinical practices, and thus resulted in a variety of interpretations.
Meanwhile, pregnant women who obtained information about prenatal testing madedecisions, often with their partners and families, based on their medical literacy andtheir perception of risks, of the tests, the pregnancy (typically advanced-age
pregnancy) and those of raising a child with disabilities (such as the impact on theircurrent lifestyle). The combination of these factors, some of which seems local to
the East Asia while some appears more universal, gives rise to the current Japanesesocio-technical system of prenatal testing, and a careful examination of this system
may perhaps lead us to a better understanding of the on-going situation such as theincreasing number of women taking NIPT.
The development of different technologies for prenatal testing has enabledparents-to-be to grasp the health status of their fetus at earlier and earlier times, ina much safer and more precise manner. New technology has also enabled users todetect more diseases of the fetus. Overtime, it has become much easier for pregnant
women to take the test, and some conditions detected can now be treated, or can
now be dealt with at the time of childbirth. However, the options available topregnant women are either to continue or to terminate the pregnancy. The emphasis
in development has been on discovering abnormalities in the fetus at an earlyenough stage so that the pregnancy can be duly terminated.55
NIPT, which had initially been targeting three types of chromosomal abnormalities, can now detect over 100 disorders. Yet, many of these have low incidence
rates, and are likely to result in miscarriages/intrauterine fetal deaths naturally, so
the early detection does not save these lives. Therefore, some specialists are critical
about including these as the target diseases for NIPT. Nonetheless, women/couples
visit non-certified clinics and choose to take the test which detects more disorders,at higher prices. The above analysis suggests that perhaps these women/couples havea set of decision-making factors and priorities different from what are consideredscientifically/medically correct, and a careful examination of intertwining culturaland technical factors is required before labelling them irrational.

55

Cowan, Heredity and Hope, 71–4.

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As mentioned, the Japanese Ministry of Health, Welfare and Labor has started
a discussion regarding the establishment of a new system of prenatal testing with afocus on NIPT. One of its main topics is the reinforcement of medical/social/
psychological support for the continuation of pregnancy even in the case of detectionof severe diseases or abnormalities. Yet very few individuals who learn of severe
abnormalities of their fetus prepare to give birth. It is reported that 90% of thosewith definitive diagnoses after NIPT chose to have termination. In such a social
climate, it is crucial that the way in which prenatal testing is presented and by whom
are critically examined.
According to OECD, in societies with stronger gender biases, including Japan,
the percentages of men taking up care-giving roles are lower. Also, the average wages
paid to women are much lower compared to men, although the percentage ofworking women has increased.56 These imply that mothers need to work for longhours and may not be able to afford enough time to attend to their children or pay
the extra medical fees for children with disabilities/diseases. This may be related to
the fact that more women/couples are explicit in wanting to have “healthy” babies.
Surveys about women’s decisions and attitudes about prenatal testing show thatwomen who want to give births without taking a prenatal test, and women who wantto take a test to get information about disorders/disabilities of the fetus so that they canready themselves for the babies to be born are understandably few, as the test results
impose hard decisions on them.57 Nonetheless, they exist. These women are notagainst induced abortion or incapable of making decisions by themselves. Rather,data seems to suggest that they are sensitive to how the development of medical
technology has marginalized women, diseased and disabled as vulnerable andincapable of making decisions, as they had long been in Japanese society, and somehow wanting to change the situation around by clearly stating what they want. To
realize this, I believe substantial changes in prenatal testing that occurred in the last
three decades in Japan and what were discussed there should be recorded and remembered. Such a record, I also believe, should provide alternative perspectives to otherhistorical investigations and analyses of socio-technical systems around the world.
Biography
Azumi Tsuge (tsuge@soc.meijigakuin.ac.jp) is a feminist medical anthropologist
whose has been engaged in analyses of technologies used in infertility treatment
and other medical technologies that exhibit gender biases. She conducts interviews
and drawing from the narratives extracted, analyzes the relationship between medical
technology, women and society.
56
57

OECD Database, accessed 12 August 2021, https://stats.oecd.org/.
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Acknowledgements
First, I wish to express my gratitude to anonymous reviewers for astute andsupportive comments. I am also grateful to Donna Drucker and Hermione Giffard
for their generous support. The study in 1991 was conducted as a part of a research
project by Seimei Rinri Kenkyu-Kai (the Bioethics Research Group). The study in
2003–4 was supported by the JSPS KAKENHI Grant JP4594023, and the study in
2013–6 by the JSPS KAKENHI Grant JP25283017. I wish to thank all the research
participants and coresearchers: Setsuko Sugano, Mari Ishiguro, Keiko Tanaka,
Chiaki Shirai, Chikoto Ihara, Yuko Nikaido and Maiko Watanabe. Lastly, I wish
to express my gratitude to Kyoko Mimura who assisted articulating discussions inthis paper and expressing those accurately in English.
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