ü×California Prenatal Screening Program
ü×Discourses on Prenatal Diagnosis
ü×Guidelines for Genetic Counseling and Prenatal Diagnosis (Japan Society of Human Genetics, December 1994)
ü×International Society for Prenatal Diagnosis
ü×Japan to try prenatal detection test for Down syndrome
ü×New Technology of Prenatal Diagnosis to Control Downüfs Syndrome Will Be Introduced in Japan (Fukushima Diary)
ü×Non-invasive Prenatal Genetic Diagnosis (NIPD) in Japan
ü×Prenatal Diagnosis (Wikipedia)
ü×Prenatal Diagnosis Center (UCSF Medical Center)
ü×Reproduction / Reproductive Technologies
ü×Resolution from Self Advocates' Meeting at the 48th National Convention of Inclusion Japan
ü@31 July- 1 August 1999, Sapporo
üíNewspaper Articles etc.
ü×March 1, 2015ü@"DNA Screening Trial OKüfd for in Vitro Embryos" üiThe Japan Times
ü×November 26, 2014ü@"Obstetrics Society Panel OKs Research to Screen in-vitro Eggs for Chromosome Abnormalities, Raising Ethical Questions" üiThe Japan Times
ü×December 3, 2013ü@"Prenatal Screening: When Knowing Can Become an Unbearable Dilemma" üiJapan Today
ü×November 23, 2013ü@"Most who Test Positive in New Prenatal Test Opt for Abortion" üiThe Japan Times
ü×October 4, 2013ü@"New Type of Prenatal Diagnosis Available" üiThe Japan Times
ü×August 28, 2013ü@"6% Would Abort if New Blood Test Finds Flaw: Study" üiThe Japan Times
ü×July 17, 2013ü@"Over 1,500 Women in Japan Take New Prenatal Test" üiThe Japan Times
ü×June 22, 2013ü@"Prenatal Tests Using Amniocentesis Rising" üiThe Japan Times
ü×June 7, 2013ü@"Doctors Helping Out with Disabled Children Both before and after Birth" üiThe Japan Times
ü×June 7, 2013ü@"Out of Respect for Life, One Woman Decides to Forgo Prenatal Testing" üiThe Japan Times
ü×June 7, 2013ü@"Mother Draws Courage from Suffering, Loss" üiThe Japan Times
ü×June 7, 2013ü@"Mom of Disabled Child Offers Support" üiThe Japan Times
ü×May 20, 2013ü@"Doctor Sued for Misreporting Fetal Defect Test Result" üiThe Japan Times
ü×March 28, 2013ü@"No Regrets for Mothers of Children with Down Syndrome" üiThe Japan Times
ü×March 28, 2013ü@"New Noninvasive Test Gives Clue but not Full Diagnosis" üiThe Japan Times
ü×March 28, 2013ü@"New Prenatal Test in High Demand but Limited to Risk Cases" üiThe Japan Times
ü×March 19, 2013ü@"New Fetal Test Guideline" üiThe Japan Times
ü×March 10, 2013ü@"Rules Pave Way for New Prenatal Blood Test" üiThe Japan Times
ü×March 5, 2013ü@"Down Syndrome Blood Test Draws Interest and Ire" üiThe Japan Times
ü×February 22, 2013ü@"Tokyo Firm to Begin Controversial Prenatal Genetic Testing via U.S." üiThe Japan Times
ü×October 30, 2012ü@"Prenatal Test Raises Ethical Concerns" üiThe Japan Times
ü×September 18, 2012ü@"Japan Medical Profession Concerned about Slippery Slope of ügCasual Use of Abortionüh" üiThe Japan Daily Press
ü×August 31, 2012ü@"Japan to Try Prenatal Detection Test for Down Syndrome" üiThe Japan Times
ü×April 5, 2012ü@"Abortions due to Congenital Defects on the Rise" üiThe Asahi Shimbun
ü×July 18, 2009ü@"German Genetics Law a Double-edged Sword" üiJapan Times
ü×NISHIYAMA Miyukiü@2015 Prenatal Diagnosis
, Chikuma Shobo, 206p. ISBN-10:4480068252ü@ISBN-13: 978-4480068255ü@760 + taxü@[amazon]
- On Prenatal Diagnosis
In a broad sense, prenatal diagnosis includes all tests conducted during pregnancy to check the growth of the fetus, abnormalities, etc. Broadly construed, even the ultrasound (echo) tests normally performed on pregnant women, and the fetal heart rate monitoring should also be included in prenatal diagnosis.
In a narrow sense, however, "prenatal diagnosis" first and foremost refers to genetic testing. Genetic testing not only examines the growth of the fetus or abnormalities, but also - and particularly - checks for congenital diseases, especially changes in the normal structure of chromosomes (chromosome aberrations), and changes on the gene level (hereditary diseases). Below I shall use the expression "prenatal diagnosis" to refer to genetic testing.
In this narrow sense, ügprenatal diagnosisüh predominantly refers to amniotic fluid testing and chorionic villus sampling. In recent years, several new additions were made to prenatal diagnosis including maternal serum screening test and ultrasound test to inspect thickness of the translucent space (nuchal translucency) behind the neck of the fetus to estimate probability of the fetus having specific chromosome aberrations.
This is the background in which 'noninvasive prenatal testing', a new method of prenatal diagnosis, was introduced in summer of 2012. The addition of this new method of prenatal diagnosis, which by examining maternal blood makes it possible to ascertain with high level of precision whether there are any fetal chromosomal abnormalities, further broadened the choices available for pregnant women.
- Classification of Prenatal Diagnosis
ç@ Non-deterministic and deterministic tests: difference between screening and diagnosis
Broadly speaking, testing methods in prenatal diagnosis can be classified into deterministic and non-deterministic ones. When one is tested with a deterministic test, the diagnosis received is practically final. For example, as amniotic fluid test is a deterministic test, if the test finds any fetal chromosomal abnormalities, this makes the diagnosis final. On the other hand, maternal serum screening test, ultrasound test to inspect thickness of the translucent space (nuchal translucency) behind the neck of the fetus, and the early pregnancy combined test comprising NT measurement and blood drawing are non-deterministic tests. These are nothing more than screenings made merely to estimate the possibility of the fetus having any chromosomal abnormalities. As screening cannot diagnose whether there are any fetal chromosomal abnormalities or not, after the screening is done, there is a need for a deterministic test. In that sense, this noninvasive prenatal testing
does not, in fact, offer 'diagnosis' but is merely a 'screening check' based on a non-deterministic test.
çA Invasive and noninvasive testing
One more way of classification of prenatal diagnosis is classification into invasive and noninvasive testing. Invasive testing includes for example chorionic villus sampling or amniotic fluid testing and carries a risk of miscarriage. Noninvasive testing, on the other hand, includes such tests as the early pregnancy combined test and the maternal serum screening test, which require nothing more than ultrasound or the expectant mother's blood, and carries almost no risk of miscarriage. Because noninvasive prenatal testing involves nothing more than a simple blood draw from the expectant mother, it is, in fact, noninvasive testing.
Based on the above, prenatal diagnosis can be classified as follows:
Chorionic villus sampling/amniotic fluid test: invasive and deterministic (the tests offer a final diagnosis but carry a risk of miscarriage)
Maternal serum screening test, ultrasound test, early pregnancy combined test, and noninvasive prenatal testing: noninvasive and non-deterministic (the tests do not offer a final diagnosis but do not carry a risk of miscarriage)
In order to avoid the risk of miscarriage, one should first take a noninvasive non-deterministic test, which will show whether there is a need for an invasive deterministic one (whether the prenatal diagnosis used is deterministic or non-deterministic will depend on the fetal disease the test covers).
- Typical Testing Methods
ç@ Amniotic fluid test (amniocentesis)
Amniotic fluid is sampled when a woman is between 15 and 16 weeks pregnant or later, and the fetal cells in the fluid are tested to determine whether fetus has any chromosomal abnormalities (invasive and deterministic testing). Sometimes the test involves not only a check of chromosomal abnormalities, but also changes on the gene level and changes in enzymes, to find out whether the fetus has any specific hereditary disease.
çA Chorionic villus sampling
Chorionic villus sampling as with amniotic fluid test is conducted to check whether fetus has any chromosomal abnormalities (invasive and deterministic testing). Similarly to Amniotic fluid test, this test also sometimes involves checks of changes on the gene level and changes in enzymes, to find out whether the fetus has any specific hereditary disease. The difference of chorionic villus sampling from amniotic fluid test is that it tests fetal cells found in chorionic villus (a part of placental tissue) between 10 and 14 weeks of pregnancy. The advantage of this method is that it allows getting the results earlier than in the case of amniotic fluid test. However, as it is technologically complex, it is available only at a limited number of medical institutions in Japan. 99% of Japan's invasive and deterministic tests are amniotic fluid test.
çB Maternal serum screening test
This is a noninvasive and non-deterministic test measuring components of the expectant mother's blood to establish the probability of the fetus having Down's syndrome, Trisomy 18, and open neural tube defects. This test is conducted to determine the necessity for implementation of an invasive and deterministic test (amniotic fluid test) and diagnostic imaging to get more accurate information. The test can be taken starting from the 15th week of pregnancy.
çC Ultrasound test
When this test shows a thickness of the translucent space (nuchal translucency) behind the neck of the fetus, or there is tricuspid regurgitation of the heart, or an underdeveloped or missing nasal bone, there is a high probability of the fetus having chromosomal abnormalities. Ultrasound tests intentionally performed for the purpose of prenatal diagnosis differ from ultrasound tests done during ordinary prenatal checkup. Therefore, ordinary prenatal checkups usually do not lead to accidental discovery of any other conditions than NT.
çD Early pregnancy combined test
This is a noninvasive and non-deterministic test measuring components of the expectant mother's blood and the thickness value of the translucent space (nuchal translucency) behind the neck of the fetus to establish probability of the fetus having Down's syndrome and Trisomy 18. It can be taken from 11 to 13 weeks of pregnancy, thus earlier than the maternal serum screening test. Early pregnancy combined test is a screening making it possible to determine necessity for invasive/deterministic tests (such as chorionic villus sampling or amniotic fluid test) or noninvasive prenatal testing which has higher precision than the other noninvasive and non-deterministic tests. In the Western countries, the test has been used since the middle of the 2000s onward.
çE Noninvasive prenatal testing (NIPT)
This test uses the latest medical technology to check fetal DNA from the pregnant woman's blood to estimate probability of the fetus having Down's syndrome, Trisomy 18, and Trisomy 13. It is generally agreed that the test is more precise than the conventional maternal serum screening test or the early pregnancy combined test, which are also noninvasive as they are based on blood drawing. However, because it is a non-deterministic screening, it cannot offer reliable diagnosis. If the test comes out positive, it is necessary to make a definite diagnosis through additional amniotic fluid test or chorionic villus sampling. If it is negative, it is generally thought that the probability of the fetus having chromosomal abnormalities is very low. (pp.7-15)
- Pregnant women, who are referred for noninvasive prenatal testing:
ç@ those whose fetal ultrasound scan showed a possibility that the fetus has abnormalities in the number of chromosomes
çA those whose maternal serum screening test showed a possibility that the fetus has abnormalities in the number of chromosomes
çB those who have conceived children with abnormalities in the number of chromosomes in the past
çC those of advanced maternal age of pregnancy
çD those who either themselves carry or whose partner carries a balanced robertsonian translocation and there is a possibility that the fetus may develop Trisomy 13 or Down's syndrome. (p.111)
-...the most significant characteristic of noninvasive prenatal testing is the higher true positive rate than the conventional non-deterministic tests...With noninvasive prenatal testing, true positive rate is 80 to 95%, enabling it to more accurately than the Quattro Test predict whether the fetus has Down's syndrome. In other words, one advantage of noninvasive prenatal testing is that now there will be less women, whose fetus does not have Down's syndrome, but who are still referred for amniocentesis, which carries a risk of inducing a miscarriage... A demerit of noninvasive prenatal testing is that although its true positive rate is high (thus helping to more reliably screen those with increased risk), test expenses are also quite high. (p.116-117)
- Summary of noninvasive prenatal testing
ç@ Although noninvasive prenatal testing is a highly precise one (allowing to screen for those at risk), it does not provide a definite diagnosis.
çA As the accuracy of the test in the case of pregnant women with low likelihood of the fetus having abnormalities in the number of chromosomes has not been sufficiently evaluated, the test is intended only for women who are at higher risk of giving birth to babies with abnormalities in the number of chromosomes.
çB In Japan, testing is restricted to Down's syndrome, Trisomy 18, and Trisomy 13, and these chromosome aberrations account for about 60% of chromosome aberrations diagnosed by amniocentesis.
çC The test does not screen for the other fetal abnormalities.
çD True positive rate for Down's syndrome is about 80 to 95% depending on the age of the pregnant woman, while true negative rate is 99% and above, but as these numbers, although quite high, do not reach 100%, the test is a non-deterministic one. Thus the test will not provide a definite diagnosis.
çE As it does not give a definite diagnosis,
- even if the test is positive, in the end, one has to undergo a chorionic villus sampling or amniocentesis to make sure whether there are abnormalities
- similarly, even if the test is negative, there is no real assurance that there are no abnormalities.
çF Noninvasive prenatal testing is thus no substitute for the chorionic villus sampling or amniocentesis, which are both deterministic tests.
çG Due to various reasons, such as low concentration of cffDNA fragments in the pregnant woman's blood, test results may be inconclusive. In such cases, one may take another blood sample and opt for a retest, or, depending on how many weeks into the pregnancy one is, undergo amniocentesis.
çH If the ultrasound test shows fetal morphological abnormalities, one may opt for an invasive and deterministic test.
çI It is said that approximately 3% of newborn infants have some congenital disease, and even if the fetus does not have any chromosome aberrations, the test may diagnose such a disease. (p.124-126)
- One advantage of the amniocentesis is that compared with chorionic villus sampling, which is another deterministic test, the risk of miscarriage is lower; another advantage is that as amniocentesis uses embryonic cells from the amniotic fluid, it allows for a more precise analysis of fetal chromosomes. In addition, another merit is perhaps the fact that the test allows one to analyze the amniotic fluid AFP values to check whether the fetus has any open neural tube defects such as anencephaly or spina bifida. (p.139)
- Overview of chromosomal analysis
ç@ Chromosomal analysis is a deterministic test administered to determine whether fetus has any chromosome aberrations.
çA In order to administer it, it is necessary to obtain fetal cells from the pregnant woman. There are two ways to obtain them: chorionic villi sampling and amniocentesis, and each has its advantages and disadvantages.
çB Since both chorionic villi sampling and amniocentesis are invasive, both of these tests may be unsafe for the pregnant woman and the fetus. Specifically, they may trigger an early rupture of membranes, infections, bleeding, or miscarriages.
çC The frequency and the type of chromosomal aberrations detected by chromosomal analysis depend on the reasons, for which the test is administered.
çD Chromosomal aberrations are only one area of fetal diseases, and chromosomal analysis cannot diagnose all of the possible diseases. Even if the fetus has chromosomal aberrations, the analysis cannot predict possibilities of his/her growth and development in various ways.
çE In very rare cases, the results of the analysis may not reflect the condition of the fetus at all. For example, in the case of mosaic, abnormal cells may not be detected.
çF Even if the results of the analysis are correct and the fetal chromosomes do not have any aberrations, in some cases the fetus may still have some congenital disease due to some other causes.
çG Sometimes, in the view of position of the placenta on the day of the test, transabdominal puncture is ruled to be dangerous, or, although the needle has already been inserted, it is impossible to obtain cells; in such cases the test has to be postponed and there is a need to schedule another day for the puncture and sample collection.
çH Sometimes it is impossible to administer chromosomal analysis due to cell growth defects and other reasons. In such cases, if time allows, it is possible to make the puncture on another day.
çI As it is thought that approximately 3% of newborn infants have some congenital disease, sometimes a disease is detected later even if there are no fetal chromosome aberrations. (p.150-151)
, YOSHIDA Kashimi
& MATSUBARA Yoko
(Eds.) March 31, 2014 Technologies and Ethics concerning Reproduction: From Japanese/European Viewpoints
, Report Issued by Research Center for Ars Vivendi of Ritsumeikan University, Vol.22, 240p. ISSN 1882-6539üŽ
May 20, 2013 On Private Property, 2nd Edition
, Seikatsu Shoin, 973p.ü@ISBN-10:4865000062ü@ISBN-13: 978-4865000061ü@1800 + taxü@[amazon]
, YOSHIDA Sachie
& LEE Wook
(Eds.) March 22, 2013 Korea Japan Disability Studies Forum 2012: Discussion over Disabilities and Illness in Japan and Korea
, Report Issued by Research Center for Ars Vivendi of Ritsumeikan University, Vol.20, 340p. ISSN 1882-6539üŽ
ü@November 30, 2012 Preimplantation Genetic Diagnosis and Prenatal Diagnosis: Modern History of Struggle over Its Introduction
, Seikatsu Shoin, 339p.ü@ISBN-10:4865000038ü@ISBN-13:978-4865000030; 3,000 yen + tax [amazon]
ü×SASAKI Aiko et.al. October 2011 "Low Prevalence of Genetic Prenatal Diagnosis in Japan," Prenatal Diagnosis
ü×TAMAI Mariko & OTANI Izumi
(Eds.)ü@March 5, 2011 Introductory Bioethics
235p. ISBN-10: 4641124205 ISBN-13: 978-4641124202ü@1995 [amazon]
March 31, 2009 "The Background to Changes in the Framework of Permission for Preimplantation Genetic Diagnosis in Japan" Core Ethics
5: 229-240 [abstract]
ü×KATO Masaeü@2009ü@Women's Rights?: The Politics of Eugenic Abortion in Modern Japan
, Amsterdam Univ. Press, 245p.ü@ISBN-10: 9053567933ü@ISBN-13: 978-9053567937ü@ümamazonün
ü@üŽ be. p01.
February 20, 2008 "Realities of Prenatal Diagnosis and Crisis of IVG from "Abnormal" Fetuses in France : Since the Perruche Judgement" Nanzan University Institute for Social Ethics, The 1st Incentive Award for Social Ethic Studies, Shortlisted Thesis
March 2008 "The Arguments in Japan over Preimplantaion Genetic Daignosis in the 1990s," Treatment & Life and Ethics & Society
7: 67-85 Osaka University Graduate School of Medicine
March 31, 2008 "The Arguments in Japan over Preimplantaion Genetic Daignosis in the 1990s", Core Ethics
July 12, 2008 Report "Over Prenatal Diagnosis"
, Ritsumeikan University
September 2008 ""Medical Treatment to Fetus" and "Self-determination of Women" in Prenatal Diagnosis: Referring to Questionnaire to Midwife,"Seimei Rinri
18(1), Japan Association for Bioethics
November 30, 2008 "Current Conditions and Challenges in Prenatal Diagnosis and Midwife's Activities: Crossing Gender Bias," The 20th Annual Convention of Japan Association for Bioethics
ü×LAFLEUR William R., BOHME Gernot & SHIMAZONO Susumu (Eds.) 2007ü@Dark Medicine: Rationalizing Unethical Medical Research
, Indiana Univ. Press, 280p., Bioethics and the Humanitiesü@ISBN-10: 0253348722ü@ISBN-13: 978-0253348722
November 11, 2007 "The Arguments in Japan over Preimplantaion Genetic Daignosis in the 1990s" The 19th Meeting of Japan Association for Bioethics
September 20, 2007 "Realities of Prenatal Diagnosis and Crisis of IVG from "Abnormal" Fetuses in France : Since the Perruche Judgement" Seimei Rinri
17(1),233/240 Japan Association for Bioethics
March 31, 2007 "The Shinsei na gimu
Issue from the Perspective of Hemophiliacs"
Core Ethics 3
March 31, 2007 "Movements over Preimplantation Genetic Diagnosis of Fertilized Ovum Within Japan: Year 1992-2006" Birth
March 21, 2007 "Conflict over Selection of Fertilized Eggs," Preparatory Doctoral Thesis, Graduate School of Core Ethics and Frontier Sciences, Ritsumeikan University
October 31, 2002 "Is No Disability Good ?"
, ISHIKAWA Jun & KURAMOTO Tomoaki (Eds.) Claim of Disability Studies
, Akashi ShotenüCpp.47-87
ü×MACER Darryl R. J.ü@1998 "Ethics and Prenatal Diagnosis," pp. 999-1024 in Genetic Disorders and the Fetus: Diagnosis, Prevention and Treatment
, eds. Milunsky, A. (John Hopkins University Press 1998)
ü×TAMAI Mariko, ADACHI Tomotaka & ADACHI Tomoko 1998 "Prenatal Diagnosis and Abortion for Fetal Abnormality," Bulletin of Shinshu University's School of Allied Medical Sciences
September 5, 1997 On Private Property
(Shiteki-Shoyu Ron), Tokyo, Keiso-ShoboüĘ"Book Review of On Private Property"
Chapter 9 "Dealing with correct forms of eugenics" (translation by Robert Chapeskie
What are the things we can decide while the other does not yet exist? There is, for example, the technology of "prenatal diagnosis"(1) and the practice of "selective abortion": a fetus is examined before birth and if it is found to have or be very likely to have a disability or illness it is aborted. I will consider issues related to this kind of practice in sections one through five.
In section one I look at the issue from both the perspective of women and that of disabled people and determine where exactly problems may arise. In section two I examine assertions of "women's rights". To decide whether or not to bring a new being into the world is not the same as to decide what sort of being that being will be. The decision itself is taken before the other exists, but it is nonetheless taken based on the assumption of the other in question existing as an other. Here I state that the object of the decision does not exist within the domain of the "self" and therefore cannot be said to be an object of the woman in question's self determination. In section three I examine assertions which are (claimed to be) made from the perspective of the person (fetus) in question. To begin with I state that the argument for justification based on the "unhappiness" of the person in question is not tenable. This is something which has been asserted within the disabled movement and is one of the points on which the women's movement has been based but has nevertheless not been widely understood. I introduce several arguments to supplement this assertion. At the same time I also state that the sort of practices in question cannot be said to be murder in the literal sense of the word and that the argument that they must be prohibited as instances of murder is not convincing. If the above can be claimed we then have no choice but to consider this issue as people existing within this society. In section four I look at why people may want to employ selective abortion. I state that for one thing this is an action an individual may carry out in order to get rid of something which they themselves find inconvenient, and I then examine the question of what it means to think about the suffering of the person (fetus) in question. In section five I discuss what can be concluded from what is stated in the earlier sections.
In section six I examine "positive eugenics". Here I suggest that the rejection of a "correct" positive eugenics which involves neither violence nor misconceptions regarding empirical facts is just as difficult if not in fact more difficult than in the case of passive eugenics. If positive eugenics can indeed be criticized I consider how this might be attempted. In section seven I augment several of the points raised in this chapter. Here I discuss, for example, the limits of what can be considered the target of criticism if only the state is considered to be an agent of eugenics.
1 Prenatal diagnosis
1-1 Prenatal diagnosis
This is indeed a difficult issue. Our morality is based the idea that everyone should be allowed to live happily and that human rights should be protected, but in this case the application of these concepts is not straightforward. We cannot simply say that the difficulty here arises from the debate grinding to a halt in the face of the intractable nature of the conflict between a disabled person's right to live and a woman's right to self determination regarding whether or not she gives birth. Before this antinomy arises whether or not the issue should be framed in this way can itself be questioned.
Here "the other" does not exist, or perhaps could be better described as being in the process of moving from not existing to existing. The decision in question is made "before" this being begins to exist as an other. When the decision is made the person in question does not exist. If so, does the right to decide not then belong to the parents? And since one part of selective abortion is abortion itself, if the latter is permissable then shouldn't the former be permissable as well? Abortion in general is something which is ultimately carried out based on the interests or preferences of the parents (people who are already alive). The same can be said of selective abortion. There can be thought of as being no difference between the interests upheld in both cases. Furthermore, since selective abortions are carried out based on the circumstances of the being who would be born, as opposed to regular abortions which are carried out based on the preferences of the person who would give birth, can they not then in fact be thought of as more ethical or humane?
One criticism which may be applied to them is that they constitute an instance of eugenics. What were the problems with eugenics, both historically and as it exists today (see chapter six section three)? One problem was that most of the postulated genetic factors were in fact mistaken. There were, however, some aspects of the understanding of genetics which were not incorrect, and some changes and eradications could in fact be carried out based on this correct understanding. Another problem was that eugenics involved violence. But in this case what occurs is not violence. Here there is neither murder nor coercion. If so what objections are left? The increasing of things which are good and decreasing of things which are not good is itself a good thing. This being the case this kind of criticism would appear to be mistaken or perverted. It would seem to be very difficult to criticize this kind of "correct" eugenics. While following the second world war eugenics came to be seen in a bad light due to its connection to Nazism and racism and as a result lost some of its pre-war impetus, it is not as though these assertions have completely disappeared and there are now no eugenic policies/practices being conducted. On the contrary, I think it can be said that it was only in the 1970s that criticism began to focus on ability and the lack of ability (disability), or in other words on the "essence" of eugenics (which is itself not unrelated to the issue of prenatal testing - see chapter six notes 44 and 45). Criticism of eugenics itself becomes problematic when it arrives at this point(2).
It is sometimes claimed that eugenics involves interferring with what is "inviolable". But this term says nothing when used on its own. To begin with, if what is being claimed is that interference/modification is impossible as a matter of fact, then since this kind of intervention is in fact already possible this claim should clearly be rejected. Second, if what is being offered as a reason to refrain from this kind of intervention is that it was impossible in the past we must then ask why this past state of affairs should be preferred. Third, if what is being claimed is that these things should or must be considered inviolable, then what is being stated here is only this conclusion without any basis for why it should be accepted being provided. Fourth, the term "inviolable" might presumably include the meaning "important". But can the existence of a disability, for example, be considered "important"?
This is related to the many things which have not been sufficiently debated in relation to decision making and discrimination. This is not the only topic which has not seen much discussion: little has been said concerning how we should consider the determination of the "value" or "quality" of human beings, one of the most important questions of the current era. Since I am uncomfortable with simply repeating that these questions are difficult or that they are not being sufficiently discussed I have attempted to make some small amount of progress in this area. For every idea I had, however, I realized there were other ways of thinking which were also possible. The discussion below is quite varied but nonetheless represents only the start of one possible approach. There are many other things which must also be considered. It is my hope that this work can provide a jumping off point for future discussion and debate of these issues. It will not have been pointless if it facilitates the discovery of openings and inadequacies or a change of assumptions following which new debates and discussions can be pursued.
Article fourteen of Japan's Eugenic Protection Act states that " **** . When reforms of this law, which included the establishment of the so called "embryo clause" which states that ***** were tabled in 1972-73 they provoked strenuous opposition movements amongst both women and the disabled. At the same time assertions of a woman's right to choose made within the women's movement often conflicted sharply with the arguments being made by those in the disabled movement. The arguments put forward at this time and the conflicts between them remain with us today(3). There are also countries where prenatal testing is undertaken on a wider basis than in Japan, but that is not to say that it is carried out without criticism(4). To begin with I will establish what sorts of criticisms have been made of prenatal testing in Japan and I will then go on to examine what we can gain from them and what should be taken into consideration. When we look at the concrete statements which have been made we see that there are some which cannot be accepted in their current form. It cannot therefore be considered a valid approach to do nothing more than simply enumerate the various arguments which have been made or point out how they intertwine with each other. There are indeed important points to be raised here. We cannot ignore something just because it is problematic, and not ignoring these issues does not mean we have to accept all of them exactly as they have been stated in the past. I feel that it is necessary for us not only to point out what is lacking in these arguments but also to try to think about a way forward. Here I my approach will be to begin by establishing the fundamental aspects of the arguments critics have made and then examine, while considering what issues they have not addressed and why, what kinds of criticisms can continue to be made in the present and further developed in the future.
1-2 Criticisms of the disabled people's movement
1-3 Criticisms/responses of the women's movement
1-4 Unresolved issues
ü×KITAI Hirokatsu et.al. 1994 "The Acceptability of Prenatal Diagnosis in Japan," International Journal of Technology Assessment In Health Care
, 10:3 (1994), 436-446
ü×November 26, 2015 (Thu) Workshop "Choice and Consent in Prenatal Testing: Australia and Japan," Ritsumeikan University
ü×July 19, 2008 (Sat) The 5th Study Group on Reproduction "Prenatal Diagnosis Questions/Questioning Prenatal Diagnosis", Organizer: Study Group on Reproduction & Global COE Program for Ars Vivendi, Rikkyo University
ü×July 12, 2008 "Over Prenatal Diagnosis"
, Soshikan Building 303/304 Ritsumeikan University
ü×July 31- August 1, 1999 "Resolutions from Self Advocates' Meeting at the 48th National Convention of Inclusion Japan"
UP:March 20, 2007 REV:January 17, 2013/January 29, 2013/November 19, 2013/October 14, 2014/March 12, 2015/June 23, 2015/June 25, 2015/July 23, 2015/July 30, 2015/November 26, 2015
Reproduction / Reproductive Technologies