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Preimplantation Genetic Diagnosis and Prenatal Diagnosis:
Modern History of Struggle over Its Introduction

TOSHIMITSU Keiko@November 30, 2012 Seikatsu Shoin, 339p.

[Japanese]

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¡TOSHIMITSU Keiko@November 30, 2012 Preimplantation Genetic Diagnosis and Prenatal Diagnosis: Modern History of Struggle over Its Introduction, Seikatsu Shoin, 339p.@ISBN-10:4865000038@ISBN-13:978-4865000030; 3,000 yen + tax [amazon]^[kinokuniya] ¦

¡Contents

"Prevention of miscarriage" or "selection of life"? This book tries to clarify under what power politics has the context of the controversy been changed and this technology been introduced by tracing the process of the controversy over introduction of preimplantation genetic diagnosis in Japan, centering on the controversy with the citizen group that consists of Japan Society of Obstetrics and Gynecology, disabled people and women. This is a must book which presents the important points of prenatal diagnosis.

¡Table of Contents

Introduction

Chapter 1@Overview concerning Development and Prevalence of Preimplantation Genetic Diagnosis Technology
@1. Preimplantation Genetic Diagnosis and Prenatal Diagnosis
@2. Overview of Introduction of Preimplantation Genetic Diagnosis in Japan
@3. Development/Introduction of Preimplantation Genetic Diagnosis in in Britain and the U.S.
@4. Differences of the Process of Introduction of Preimplantation Genetic Diagnosis between in Japan and in Britain and the U.S.

Chapter 2@Prehistory of the Controversy over Preimplantation Genetic Diagnosisi1970s to early 1990sj
@1. 1970s: "Eugenic" Age
@2. Early 1980s: Popularizing Reproductive Technology and Prenatal Diagnosis
@3. Late 1980s: Coalition of Disabled People's Movements and Womens' Movements
@4. Early 1990s: Boiling Controversy

Chapter 3 Controversy Period over "Selection of Life Technology"i1992 to 1998j
@1. Process of Dispute over Preimplantation Genetic Diagnosis i1992 to 1998j
@2. What Was Disputed?: Response of the Japan Society of Obstetrics and Gynecology to the Open Letter of the "Network Questioning Eugenic Thoughts"
@3. Remained Question: Why Is It Allowed to Prevent Birth of a Baby If His/Her Situation Is Serious?
@4. Thoughts by Disabled People and Women concerning Reproductive Technology

Chapter 4@Preparatory Period toward Clinical Practicei1999 to Summer 2004j
@1. Process of Dispute over Preimplantation Genetic Diagnosis i1999 to Summer 2004j
@2. Branching of Within of the Medical Community: Submerged Battle/Preparation/Launch
@3. Role of the Japan Muscular Dystrophy Association
@4. Impact of Interim Report of the Expert Panel on Bioethics of the Council for Science and Technology Policy
@5. How Was Preimplantation Genetic Diagnosis Introduced?

Chapter 5@Extended Use Period toward Infertility TreatmentiAutumn 2004 to Winter 2006j
@1. Process of Dispute over Preimplantation Genetic Diagnosis iAutumn 2004 to Winter 2006j
@2. Extended Use by Interpretation Framework of "Preimplantation Genetic Diagnosis as Infertility Treatment"
@3. Background of Acceptance of "Preimplantation Genetic Diagnosis as Infertility Treatment"

Chapter 6@Spread Period of "Preimplantation Genetic Diagnosis as Prevention of Miscarriage"iSpring 2006 to 2010j
@1. Process of Dispute over Preimplantation Genetic Diagnosis iSpring 2006 to 2010j
@2. Preimplantation Genetic Diagnosis Seen from the Historical Process of Reproductive Medical Care to Translocation Carriers
@3. Controevrsy over Revision of "Guidelines concerning the Preimplantation Diagnosis Presented by the Japan Society of Obstetrics and Gynecology"

Afterword
Cited Reference
Chronology
Materials

¡Excerpt

Chapter 1@Overview concerning Development and Prevalence of Preimplantation Genetic Diagnosis Technology

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Preimplantation genetic diagnosis (PGD) can be described as a gtechnique in which [healthcare professionals] biopsy part of the blastomere of an early stage embryo created through in-vitro fertilization for the purpose of obtaining chromosomal and genetic information,h and gis conducted as part of a process of (1) in vitro fertilization, (2) biopsy of embryo cells used in the diagnosis, (3) diagnosis of genes/chromosomes, (4) transplantation of the embryo, (5) optional diagnosis of the fertilized egg before birth to reconfirm the diagnosish (Yoshimura 2010: 118). In other words, regardless of whether or not a natural pregnancy is possible, PGD begins with sperm and eggs being taken from the couple to obtain a fertilized embryo through in-vitro fertilization. In order to extract the eggs an ovulation inducer such as a GnRH pharmaceutical (taken nasally or through a sub-cutaneous injection) or hMG-hCG shot is administered to the woman, whether an egg is mature or not is determined by measuring hormone levels through a blood test or with an ultrasound examination, and when a mature egg is found it is extracted. This egg is then fertilized in a culture solution with sperm that has been obtained ahead of time, and two or three days later, by which time the embryo has reached the stage of having four to eight cells, one or two cells are extracted and subjected to chromosomal and genetic testing. The procedure then allows the embryo from which cells were extracted for testing to continue to develop, and, if it is determined to be gnormalh, it is then implanted in a womanfs uterus. Tests using polar bodies released when the egg matures and blastocyst biopsies in which larger numbers of cells are extracted around five days after the egg has been fertilized are also conducted. Even once a pregnancy is achieved, gas the accuracy is only 70% to 80%, [these tests are] generally used in conjunction with chorionic villus sampling and amniocentesish (Yoshimura, 2010: 123).

Testing methods that are mainly used include PCR and FISH. PCR is a testing method in which the target genes are amplified, and is mainly used to diagnose monogenic disorders (disorders believed to be caused by a single gene). FISH is a method in which DNA probes marked with fluorescent pigment are added to chromosomes to color them and allow for the gathering of chromosomal information with light, and is used to determine sex and the number and structure of chromosomes. Recently, an approach called garray CGH (micro-array comparative genomic hybridization)h has made it possible to comprehensively examine all chromosomes in a short period of time and discover minute changes in DNA by conducting analysis using a genome array (DNA chip) in which genomic fragments are sequentially affixed to a base such as a glass slide.

Preimplantation genetic diagnosis can be broadly divided into diagnosis aimed at avoiding genetic disorders and preimplantation genetic screening (PGS, also referred to as gchromosomal aneuploidy screeningh) conducted as part of fertility treatment. The former targets carriers with the potential to pass on genetic or chromosomal mutations to their children, and in the case of monogenetic disorders looks for the presence or absence of genes that cause disease. In cases of X-chromosome-linked recessive genetic disorders sex is determined. In cases in which chromosomal structural abnormalities arise in children because of a translocation in the chromosomes of one of the parents and recurrent miscarriage (three or more miscarriages) occurs, chromosomal structural variations are examined. Preimplantation genetic screening (PGS), on the other hand, is a process targeting infertile patients in which the rate of successful childbirth is increased by checking for abnormalities in the number of chromosomes during in vitro fertilization/implantation and implanting only gnormalh embryos in order to increase the rate of pregnancy and avoid miscarriages. PGS targets cases in which a patient cannot become pregnant no matter how many times she undergoes IVF treatment or constantly miscarries as a result of chromosomal variations that arise by chance through chromosome non-disjunction or sudden mutations in the course of development, and cases of infertility of women of an advanced age.

In other cases, these techniques are also used to conduct preimplantation genetic diagnosis for the purpose of giving birth to a donor baby without genetic disorders and with a compatible HLA type to enable cord blood cell or bone marrow transplantation for a sibling with a genetic disorder, and for sex selection (giving birth to a male or female child) for social purposes.

gPreimplantation genetic diagnosish, as the name implies, is a kind of prenatal diagnosis conducted before the fertilized egg is implanted in the uterus. Post-implantation prenatal diagnosis, that is, fetal diagnosis, had been conducted before the advent of pre-implantation genetic diagnosis. In concrete terms, examinations with the aim of a definitive diagnosis include amniocentesis tests using cells originating from the fetus that can be found floating in the amniotic fluid from the 15th week of pregnancy onward, and chorionic villus sampling in which a part of the placenta is examined between week 10 and week 14 of a pregnancy. Non-definitive testing (screening) includes ultrasound exams that examine the shape of the fetus as an ultrasonic image and maternal serum marker testing that estimates the chance of Downfs syndrome or spina bifida based on an increase or decrease in the amount of hormones and proteins in the motherfs blood. Another kind of diagnosis being conducted is nuchal translucency, a test that looks for the possibility of chromosomal abnormalities by measuring the thickness of subcutaneous edema behind a fetusf neck with an ultrasound exam. And recently testing that extracts infinitesimal quantities of cells or DNA originating in the fetus and analyzes their genetic information has also begun to be used.

So what sorts of differences are there between preimplantation genetic diagnosis and the fetal diagnosis that has been used up until now?...

Sato Kodo (1999) presents (1) to provide treatment to the fetus, (2) to decide on the method of delivery and prepare for post-natal care, and (3) to provide the couple with information related to whether they will continue the pregnancy or not as the three purposes of fetal diagnosis. And since an abortion will often be carried out if the fetus is found to have a disorder, he states that gin contrast to the first and second purposes which follow the natural progression from diagnosis to treatmenth, in the case of the third purpose, gwhile the target of the diagnosis is the fetus, from the perspective of this fetus itself what awaits is not treatment but the loss of its lifeh (Sato 1999: 2-4). In the case of diagnosis undertaken before implantation, the purpose is to select a suitable embryo for pregnancy/birth of a genetically gnormalh child. Or, in the case of sex selection or the aim of giving birth to a donor baby, the purpose is to select an embryo in line with a certain intention. This does not correspond to either of Satofs first or second purposes. Moreover, while in the case of fetal diagnosis the couple is given information about their fetus but the option of continuing the pregnancy knowing the fetus has a disability or disease exists, this is not the case when it comes to pre-implantation genetic diagnosis. With the determination made at the time of diagnosis, the choice of what kind of fertilized egg to select is taken out of the couplefs hands and embedded in the technical process. We can thus say that this kind of diagnosis is not [undertaken for] Satofs third purpose either . This is the major difference between pre-implantation genetic diagnosis and the fetal diagnosis that has been conducted in the past (pp.22-26).

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Following its introduction in the late 1960s, amniocentesis gradually became more and more common, and in the late 1990s and start of the 2000s it was being carried out roughly 10,000 times per year. With the number of pregnancies per year being around 1,200,000 during this period, this means that approximately 1% of pregnant women underwent amniocentesis (Sago et al. 2005). From around 2003 the number of amniocentesis tests increased year by year, and in 2008 there were about 13,000 performed (Sasaki et al. 2011). After its introduction in 1994, the use of maternal serum marker testing reached approximately 15,000 instances in 1997 and 22,000 instances in 1998, but this use then gradually declined following the release of the gposition paper concerning maternal serum marker testingh by the Ministry of Health, Labor and Welfarefs gexpert committee on prenatal diagnosish in 1999 which called for self-restraint. By around 2000 the use of this testing was roughly 15,000 cases per year (Sago et al. 2005), but it then began to gradually increase, reaching approximately 18,000 cases per year in 2008 (Sasaki et al. 2010).

There are few studies examining the reasons for receiving prenatal diagnosis. In a study of 1641cases at eight facilities including some of the countryfs major universities, the most common reason reported was the patient having previously experienced giving birth to a child with a chromosomal abnormality (1027 cases/62.4%), followed by pregnancy at an advanced age (242/14.7%). The study states, grecently a trend toward an increase in use for pregnancy at an advanced age can be seen, but this is only a small increase and has not reached the point of displaying an exponential jump of the kind seen in the United Statesh (Sukawa et al. 1983: 241). But in a 1997 study targeting 270 medical facilities such as the obstetrics departments of university faculties of medicine and affiliated hospitals, among the 5,557 cases in which amniocentesis was performed the most common reason for this procedure was the advanced age of the woman in question (3,611cases/65%). Next came the womanfs concern at having a person with a disability in her family line (9.8%), a diagnosis of high risk from a maternal serum marker test (9.1%), and experience of having given birth to a child with a chromosomal abnormality (7.8%), with other reasons including signs of abnormalities in ultrasound exams and one of the parents being a carrier of a chromosomal structural abnormality (Matsuda et al. 1998). Turning to data from specific institutions, a study of amniocentesis at Yokohama City University Obstetrics Department/Maternal and Child Healthcare Center found that advanced age pregnancy was the reason for 77% of the 135 procedures performed between 1993 and 1998, and that advanced age pregnancy was the reason for 64.2% and the results of NT or maternal serum marker tests were the reason for 6.8% of the 148 procedures performed between 1999 and 2003 (Ando et al. 2004). Among the 2,960 amniocentesis tests performed between 1999 and 2005 at Osaka City General Hospital, advanced age pregnancy was the reason for 57.2% while fetal factors such as NT were the reason for 13.2% (Watanabe et al. 2007). Looking at the 9,101 samples submitted to testing companies between 2002 and 2006, advanced age pregnancy was the reason for the test in more than 50% of these cases. As a result of the number of cases in which NT hypertrophy was the reason for such tests increasing over this five-year period, at present advanced age pregnancy and NT hypertrophy together comprise the reason for over 70% of these procedures, followed by experience of having given birth to a child with perinatal fetal abnormalities or chromosomal abnormalities, a positive maternal serum marker test, and being a carrier of a chromosomal structural abnormality (Sasaki et al. 2008). Among the 84 cases in which amniocentesis was requested at Kansai Medical University between 2006 and 2009, advanced age pregnancy was the reason for 32.1%, fetal abnormalities including NT hypertrophy were the reason for 38.1%, and experience of giving birth to a child with a disability was the reason for 15.5% (Toida et al. 2010). In general, we can say that when amniocentesis first began to be carried out, in most cases the reason for undergoing the test was having given birth to a child with a chromosomal abnormality in the past, over time those receiving this test because of an advanced age pregnancy increased to 50%-70% of the total, and recently cases in which this test is used to confirm the results of other screening tests such as NT and maternal serum marker tests are becoming more numerous.

There are even fewer data regarding the state of selective abortion following prenatal diagnosis on a national level. According to a national survey by Matsuda et al. (1998), in 27 (10.9%) of the 248 cases in which an abnormality was found through a prenatal diagnosis (amniocentesis, chorionic villus sampling, fetal blood testing) the pregnancy was continued, with an abortion presumably having been performed in the remaining 90% of cases. In a report by an individual healthcare facility, in the 114 cases between 2004 and 2009 in which a diagnosis was sought after fetal abnormalities were suspected in the first 22 weeks of a pregnancy at Kanazawa Prefecture Childrenfs Health Center, 47.3% of the pregnancies were intentionally terminated (Yamanaka et al. 2007). The rate of abortion in cases in which an abnormality was found through amniocentesis has also been reported as 75% (Mochizuki et al. 2004), 69.8% (Watanabe et al. 2007), and 50% (Toida et al. 2010). According to a report by the Japan Society of Obstetricians and Gynecologists released in 2011, between 1990 and 1999 there were 5,381 cases in which an abortion can be assumed to have been performed following diagnosis of fetal abnormalities. Between 2000 and 2009 there were an estimated 11,706 cases, an increase of 2.2 times over the number of cases in the 1990s. These were surveys targeting roughly 330 childbirth facilities throughout Japan, with the results being augmented to compensate for a response rate of 25%-40% and thereby provide an estimate of the total that would have been reported had all facilities completed the survey (Yomiuri Shimbun, July 22, 2011). Yamanaka, amidst an gunclear state of affairsh with no method of conducting a survey, estimated that gat a conservative estimate, between 1500 and 1600 abortions were conducted with fetal abnormalities as the reasonh (Yamanaka 2008:26) (pp.26-29).

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In Japan there is no law or official system that comprehensively regulates reproductive medicine, and the de facto basis for regulation are the gposition papers (socoety reports)h, or guidelines established by the Japan Society of Obstetrics and Gynecology (hereafter JSOG). Regarding the introduction of pre-implantation genetic diagnosis, too, the trend toward the creation and application of gposition papers (society reports)h of the JSOG came to carry great significance. Beginning with this movement toward gposition papers (society reports)h of the JSOG, the history of the introduction of pre-implantation genetic diagnosis in Japan can be divided into four periods.

The first period, gdebate over technology that eselects certain lives while rejecting othersfh lasted from the introduction of pre-implantation genetic diagnosis at the start of the 1990s until 1998. After a debate between researchers/healthcare providers and the JSOG that were planning to introduce these technologies to clinical practice and disabled peoplefs groups and womenfs groups who opposed this introduction, in October of 1998 the JSOG released a gposition paper (society report) concerning pre-implantation genetic diagnosish that approved the conducting of pre-implantation genetic diagnosis as clinical research. The scope of application of this gposition paperh was limited to gsevere genetic disordersh, and permission from the society was to be applied for and obtained when these techniques were implemented.

The disabled peoplefs/womenfs groups that opposed the clinical introduction of these technologies claimed that gpre-implantation genetic diagnosis is the selection of lives [to be accepted or rejected] and it is also discrimination againtst persons with disabilities and illnesses. At the same time it is also a technology that puts an excessive burden on the minds and bodies of women and forces them to give birth to genetically healthy childrenh. On the other hand, the people involved in the field of medicine/JSOG that were working to introduce these technologies into clinical practice asserted that while pre-implementation diagnosis gentails various medical, social, and ethical problemsh and is ga technique that selects livesh, it could nevertheless be justified by limiting the scope of its application to gsevere genetic disordersh and respecting the right to self determination of women (couples)...

The second period, gpreparing for clinical implementationh, lasted from 1999 until the JSOG gave permission for the first domestic use of this technology in 2004. Amidst the ongoing deep-rooted opposition of disabled peoplefs/womenfs groups, by taking a strict interpretation of the gposition paper (society report)h and limiting permission to gdiagnosis of disease genesh that cause gextremely severe genetic disordersh, the JSOG obtained social consensus and attempted to begin pre-implantation genetic diagnosis. As a result, there was a quiet period of several years during which all applications to the JSOG for permission to conduct clinical implementation were rejected. There were two camps among the medical organizations advancing the introduction of pre-implementation diagnosis, infertility clinics and research/medical facilities such as university hospitals, and each interpreted and each attempted the clinical introduction of pre-implantation technology with its own perspective/approach. The Keio University Group shared the same approach as the JSOG, and, taking opposing opinions into account, created a protocol excluding pre-implantation genetic screening (PGS) and checking only for disease genes, thereby approaching the lifting of the ban with a gstrict frameworkh.

From the end of 2003 into 2004, applications were submitted by Keio University and Nagoya City University. Immediately afterwards it came to light that a Kobe obstetrician and gynecologist (Dr. Otani Tetsuro, head of Otani Womenfs Clinic), had been performing pre-implantation genetic diagnosis for the purpose of sex selection and preventing chromosomal abnormalities in advanced age pregnancies without applying for permission. This effectively became a tipping point, and in July of 2004 an application for the use of these technologies regarding Duchenne muscular dystrophy was accepted and became the first instance of the JSOG approved pre-implantation genetic diagnosis in Japan.

The third period, gexpansion of application to infertility treatmenth, lasted from the fall of 2004 until the winter of 2006 when the JSOG released its gway of thinking about [the use of] pre-implantation genetic diagnosis against recurrent miscarriage (explanation)h a document that approved the use of pre-implantation genetic diagnosis against recurrent miscarriage. Dr. Otani and others, while seeking social acceptance and shifting the main focus of their diagnosis to recurrent miscarriage, began once again to conduct pre-implementation diagnosis outside the regulations of the JSOG. They asserted that greceiving a pre-implantation genetic diagnosis is a fundamental human right/right to the pursuit of happiness of a woman (couple) who wants ith , and that gpre-implantation genetic diagnosis merely finds fertilized eggs that, as a result of their chromosomal abnormalities, could not be implanted or would be destined for miscarriage anyway, and returns to the womb only fertilized eggs capable of developing as fetuses, and does not amount to eugenic thought or the selecting of livesh. The birth of child after child was reported in the spring of 2005, and there was much discussion of using pre-implantation genetic diagnosis as an infertility treatment. In this way the idea of gpre-implantation genetic diagnosis for the sake of preventing miscarriage with few ethical problemsh arose. When pre-implantation genetic diagnosis obtained the social framework of ga part of infertility treatmenth, the assertion that choosing it was a matter of the woman (couple)fs free will and right to the pursuit of happiness also became easier to accept.

Underlying the rapid spread of awareness of gpre-implantation genetic diagnosis as infertility treatmenth, there were calls from people connected to infertility clinics and patients suffering from an inability to become pregnant/carry a pregnancy to term for the acceptance of pre-implantation genetic diagnosis as one option for those seeking treatment for infertility. In response to these demands, in February of 2006 the JSOG recognized the expanded application of these technologies to cases of recurrent miscarriage caused by chromosomal translocation, and in December of that year gave permission for such application to be implemented...

The fourth period, gthe spread of epre-implantation genetic diagnosis to prevent miscarriagefh, lasted from the autumn of 2006 until 2010, when the revision of the 1998 gposition paper (society report)h to take into account the practice of gpre-implantation genetic diagnosis to prevent miscarriageh was implemented. From 2006 onward, pre-implantation genetic diagnosis came to be implemented in the context of gmiscarriage preventionh in addition to preventing gsevere genetic disordersh. By the end of 2009, over 80% of approved pre-implantation diagnoses were [for] grecurrent miscarriage caused by chromosomal translocationh.

In 2010, the JSOG undertook the revision of the gposition paper concerning pre-implantation genetic diagnosish, cutting the entire gexplanationh section of the 1998 gposition paperh that had clarified it was gbased on disease genesh, and adding chromosomal abnormalities to the scope of application of these technologies as severe genetic abnormalities. It also explicitly accepted the application of these diagnoses to recurrent miscarriages, approval for which had only been forthcoming in an inadequate form in 2006. This cleared away the gstrict frameworkh that had been adopted in the face of strong criticism from disabled peoplefs / womenfs groups since the early 1990s, and signified the creation of a new framework in which the use of pre-implantation genetic diagnosis as a reproductive technology was justified by the patientfs right to self determination.

Taking this kind of broad overview of the development of the debate concerning the introduction of pre-implantation genetic diagnosis in Japan, we see that while these techniques were viewed as gprenatal diagnosis to avoid giving birth to children with genetic abnormalitiesh during the period of their initial introduction, with the spread of Dr. Otanifs assertions throughout society around 2004 there was suddenly a focus on their ginfertility treatment technology to prevent miscarriageh aspect, and as a result the core meaning of gselecting fertilized eggsh shifted from gselecting livesh to gpart of infertility treatmenth, and thus toward gthe womanfs (couplefs) pursuit of happinessh. From 2006 onward, pre-implantation genetic diagnosis has been implemented in a context of gmiscarriage preventionh as well as to prevent gsevere genetic disordersh (pp.30-34).

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Dr. Ko Sueoka, a member of the Keio Obstetrics and Gynecology Group and was the main impetus behind the introduction of pre-implantation genetic diagnosis in Japan, states, gfrom the perspective of countries in which this technology was accepted early on, Japanfs pre-implantation genetic diagnosis has been understood to be extremely constrained, backward and undevelopedh (Sueoka 2007:649). In Japan, too, there had been plans to immediately introduce the pre-implantation genetic diagnosis technology developed in the U.K. at the start of the 1990s for clinical use. In Europe and America, sex determination and disease gene diagnosis were conducted for the purpose of preventing severe genetic disorders, and in no time pre-implantation genetic screening (PGS) had begun to be used as part of infertility treatment, with the number of such cases increasing rapidly from the 2000s onward. In contrast to this rapid introduction, in Japan strong opposition from disabled peoplefs groups and womenfs groups arose at the same time that plans for clinical use were made public, and in 1998 these technologies were limited to gsevere genetic disordersh, and even after implementation guidelines had been established on the basis of the regulations of the JSOG all applications for permission were rejected. The first case in which the use of these technologies was permitted in Japan did not come until 2004. In particular, it was decided that PGS connected to tests for chromosomal aneuploidy would not be carried out, and permission was given only for ggenetic diagnosis of disease genesh. As of October of 2012, the implementation of PGS has not been included within the scope of application of the gposition paper (society report)h of the JSOG.

What brought about this difference in how these techniques were introduced? I will lay out the main reasons...

One reason can be thought to lie in the different views of prenatal diagnosis and the selective abortions that result from it taken in Japan and in Europe and America, a differing perspective that arose out of differences in historical development. In the Europe and America, amniocentesis became more common along with the legalization of abortion in the 1970s (Cowan, R.S. 1994). In America, the U.S. Supreme Courtfs 1973 Roe v. Wade decision legalized choosing abortion as ga womanfs right to privacyh, but ahead of this decision there had already been a development of arguments demanding the relaxing of abortion regulations triggered by the Finkbine incident (1962) in which a pregnant woman who had taken Thalidomide sought an abortion because of the probability her fetus would have disabilities. The Roe v. Wade decision found that a womanfs right to privacy, i.e., her right to self-determination, had an extremely wide scope of application as the foundation of a free society and included the decision of whether or not to continue a pregnancy, but even after this ruling abortion continued to be a focus of serious political debate. Within an ongoing paradigm of strict opposition to the pro-life movement, the pro-choice movementfs aim was the complete protection of a womanfs right to choose whether or not to give birth regardless of her reasons, and this movement did not view selective abortion as particularly problematic (Ogino 2005).

Furthermore, from the perspective of the history of eugenics, from the end of the 1960s a total rejection of eugenics arose within the context of criticism of genetic determinism, and throughout the 1970s an understanding of eugenics as the forcible intervention of the state in the private domain of reproduction took hold. This made it difficult to attach the term geugenicsh to selective abortion performed as a result of prenatal diagnostic techniques such as amniocentesis that had begun to be implemented as the autonomous choice of women (couples) on the basis of respect for the principle of the autonomy of reproduction (Matsubara 2000b).

In Japan, on the other hand, as discussed in Chapter 2, when the clinical introduction of amniocentesis, one of the prenatal diagnosis techniques, was being considered in the 1970s, Aoi Shiba no Kai and other disabled peoplefs groups clearly asserted that prenatal diagnosis was the implementation of eugenics by the state and discrimination against people with disabilities, and formed a strong movement in opposition to the government and medical institutions. At the same time, in response to the womenfs movement that sought the right to self-determination regarding abortion, they also questioned whether selective abortion should fall within the scope of self-determination. In the end this meant pointing out that prenatal diagnosis included an autonomous eugenics operating in the form of self-determination, and this was taken into consideration by the womenfs movement. In this way the understanding that gprenatal diagnosis is the selection of livesh remained influential in Japan, and there is a history of even the medical community taking a sensitive approach to developments in this area. Against this backdrop, disabled peoplefs groups and womenfs groups declared their strong opposition when pre-implantation genetic diagnosis was being introduced at the start of the 1990s, and the medical community, beginning with the JSOG, can be seen as having been forced to respond carefully in order to introduce these technologies while obtaining social consensus...

If we look at trends surrounding pre-implantation genetic diagnosis since 2007, however, we see a reversal in the paradigm of a restrained/cautious Japan and an enthusiastic Europe and America regarding the introduction of these techniques. As can be seen in the 2010 ESHRE PGD Consortium position paper (Harper et al. 2010a), at present, primarily in Europe and America, doubts about the validity/reliability of pre-implantation diagnostic technologies themselves, including pre-implantation screening (PGS), have come to light, mainly because of the existence of mosaicism in early stage embryos. In the Japanese reproductive medicine community, on the other hand, the movement to further improve pre-implantation genetic diagnosis technologies and to seek to efficiently gmanage the quality of embryosh through comprehensive analysis is also quite strong (pp.60-61).

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Amniocentesis, the clinical introduction of which was undertaken at the beginning of the 1970s, was clinically implemented and propagated in a form that was incorporated into the gmovement to avoid giving birth to unfortunate childrenh that had begun in the mid 1960s in various regions throughout Japan. The gmovement to avoid giving birth to unfortunate childrenh was part of a set of policies to prevent the birth of children with disabilities in order to reduce welfare costs. In this way the social basis for the introduction of amniocentesis was established as a national policy colored by elements of group-based eugenics.

Against the backdrop of the propagation/implementation of amniocentesis, at the beginning of the 1970s a movement to reform the Eugenic Protection Act by eliminating geconomic reasonsh and introducing a fetus clause arose. Within this opposition movement a stark division opened up between women and people with disabilities regarding selective abortion and a womanfs right to self-determination concerning reproduction. Groups of people with disabilities, including gAoishiba no kaih, clashed with the womenfs movement demanding gself-determination concerning whether or not to give birthh over whether aborting a fetus because it has a disability should be included within gself-determinationh. hAoishiba no kaih took a critical stance toward abortion in general. When it came to the movement to reform the Eugenic Protection Act, however, all of these groups banded together to fight their immediate enemy: state intervention in reproduction.

From the end of the 1970s onward, the number of cases in which amniocentesis was performed increased steadily, and the medical community, mindful of the strong criticism being levelled by disabled peoplefs groups, positioned this testing not as a straightforward exclusion or elimination of people with disabilities but rather as something carried out to fulfill the wishes of the woman or couple in question, and referred to selective abortion as gtherapic abortionh. In this way a gprenatal testing on the basis of medical care providersf explanations and the wishes of the woman (couple)h framework began to take shape. At the end of the 1970s group-based geugenicsh was becoming increasingly taboo in Japan as it was in many other countries; what was put forward as a guiding principle was reproductive autonomy.

The 1980s was an era in which reproductive technology, beginning with the birth of the first in-vitro fertilization baby, began to spread rapidly, and in which intervention in womenfs bodies also became more intense. When the movement to revise the Eugenic Protection Act stirred again at the start of this decade, in opposing state control of womenfs bodies/population policies womenfs groups sought to restore decision making rights to the individual, and asserted that gto give birth or not to give birth is for women to decideh. As in the 1970s a debate arose between disabled groups and womenfs groups, but a path to understanding gradually opened up both from demands to simultaneously abolish both the crime of abortion and the Eugenic Protection Act and from the existence of women with disabilities within the disabled movement being pushed to the fore and the emergence of women who spoke about ggiving birth or not giving birthh from the perspective of having a disability. In the midst of working together on causes such as the gmovement in opposition to the revision of the Maternal and Child Protection Acth, their mutual understanding was also deepened by a clearer view of the legal and social systems designed to control reproduction and the position of women and people with disabilities within them.

The 1990s was an era in which, along with the legal framework transitioning from the Eugenic Protection Act to the Maternal and Child Protection Act, the debate surrounding assisted reproductive technology and technology concerning prenatal diagnosis came to a boil. A strong movement in opposition to the propagation of maternal serum marker testing on a commercial basis was undertaken by people with disabilities, their parents, and womenfs groups, and with the release of an opinion that git is neither necessary for doctors to actively provide pregnant women with information about this test, nor should they recommend ith by the Ministry of Healthfs expert committee use of this test did not spread very quickly. In Japan implementation of prenatal diagnosis as mass screening did not obtain much support, even within the medical community in 1990s.

In the mid 1990s, broad agreement was reached between disabled peoplefs groups and womenfs groups on points such as the decision of whether to give birth or not being a womanfs fundamental right, opposition to control of the quality of life conducted through intervention in womenfs bodies, and the aim of removing social barriers that make it difficult for people with disabilities to live in order to eliminate or reduce selective abortions. However, whether receiving prenatal diagnosis and having an abortion because her fetus has a disability should be included within the scope of a womanfs self-determination a wide gap between them remained (pp.95-96).








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