IGS Project Series No. 1

IGS Seminar

Choice and Consent in Prenatal Testing

Institute for Gender Studies
Research Organization for the Promotion of Global Women’s Leadership
Ochanomizu University

―Table of Contents―
1. Seminar Details ..................................................................... 2
2. Foreward ·············································································· 3
3. Catherine Mills (Monash University)“Choice and Consent in Prenatal Testing in Australia” ·················· 5
4. Azumi Tsuge (Meiji Gakuin University)“What Do Women Want to Choose in Prenatal Testing in Japan?” · 39
5. Commentator: Marcelo de Alcantara (Ochanomizu University)“Prenatal Testing from a Legal Perspective ································ 47
6. Questions and Answers ·························································· 51
7. Seminar Report on IGS website ·············································· 56
8. Power Point Slides
Catherine Mills ··································································· 61
Azumi Tsuge ······································································ 71
9. Poster ················································································· 79
10. Photo Gallery ······································································ 80

1Seminar Details【Date/Time】
November 18th, 2015, 18:15～20:45【Seninar Venue】
Room #408, Graduate School of Humanities & Science Building
Ochanomizu University【Speakers】
Catherine Mills, Ph.D （Monash University）“Choice and Consent in Prenatal Testing in Australia”
Azumi Tsuge, Ph.D （Meiji Gakuin University）“What Do Women Want to Choose in Prenatal Testing in Japan?”【Commentator】
Marcelo de Alcantara, Ph.D（Ochanomizu University）“Prenatal Testing from a Legal Perspective”【Coordinator】
Yukari Semba, Ph.D （IGS, Ochanomizu University）【Organizer】
Institute for Gender Studies, Ochanomizu University【Number of Participants】
92

Foreword
Dr. Mills has many publications related to the issues of abnormal fetuses and abortion,
prenatal testing, and women’s reproductive autonomy. In Japan, non-invasive prenatal
screening tests (NIPS) were introduced in April 2013. NIPS consists of cell-free fetal
DNA screening. Before the clinical use of NIPS was introduced in Japan, there weremany debates about its appropriateness, specifically regarding whether it might
promote the selective abortion of potentially abnormal fetuses. So we decided to
discuss on the issue in this seminar, and asked Dr. Mills to give a presentation titled“Choice and Consent in Prenatal Testing.” We also invited Professor Azumi Tsuge (Meiji
Gakuin University) to provide her knowledge about prenatal testing in Japan. We asked
Professor Marcelo de Alcantra (Ochanomizu University) to deliver comments from alegal perspective.
In the field of reproductive medicine, women’s reproductive choice and moral
responsibility will receive more and more attention because of the increase inpregnancies of women with advanced maternal age in Japan. We would like to keep intouch with Dr. Mills and work with her on these issues in some way in the future.
we were able to enjoy a thorough discussion even though the number of seminar
participants was not large. Please read the following pages of this report for details ofeach presentation, comments, and so forth.
Dr. Ryoko Ishikawa (Ritsumeikan University) made the seminar possible byintroducing Dr. Mills to us. We appreciate her support towards our institute.
On a more personal note, I joined the Institute for Gender Studies in the middle ofSeptember, 2015. The experience of arranging a seminar like this one was new to me,
but my colleagues at the institute provided me with all of the support I needed, forwhich I am deeply appreciative.

March, 2016
Yukari Semba, Ph.D.
Project Research Fellow, IGS, Ochanomizu University3

セミナーを開催して2015 年 7 月、同年 11 月に来日予定であったモナシュ大学（オーストラリア）のキャサリン・ミルズ氏を、立命館大学准教授の石川涼子氏（元 IGS アソシエイトフェロー）からご紹介いただき、ジェンダー研究所にて、ミルズ氏を迎えての生殖医療とジェンダーをテーマにした英語セミナーを開催することが決定した。
ミルズ氏は、胎児の障害と中絶、リプロダクティブ･オートノミー等に関連する論文を多く発表し、出生前検査における倫理的側面からの研究も勢力的にされている。日本でも 2013 年 4 月から新型出生前検査（NIPT）が実施されるようになり、
NIPT の導入をめぐっては賛否両方の声が聞かれた。そこで、今回のセミナーでは出生前検査と選択的中絶の問題をとりあげることにし、ミルズ氏には「Choice andConsent in Prenatal Testing（出生前検査における選択と同意）」というタイトル
で報告していただくことになった。そしてこれを本セミナーのタイトルにした。ミルズ氏のほかに、日本の出生前検査についての聞き取り研究調査を続けられ、諸外国の出生前検査についても多くの情報をお持ちの明治学院大学の柘植あづみ氏をお招きし、日本の状況についてご報告いただくことにした。合わせて、生殖医療の法学的側面に造詣の深い、お茶の水女子大学のマルセロ・デ・アウカンタラ氏にコメントをお願いした。
当日は夜のセミナーであり、また雨も降っていたため、出席者は 9 名と少なかったが、少人数で充実した討論が出来たと思われる。セミナーの詳細については、このあとに続く報告をご覧いただきたい。
今後も出生前検査のみならず、多くの生殖をめぐる医療分野で、女性の選択と道徳的責任が重要な問題となるだろう。ミルズ氏とは今後もさまざまな形で情報交換を続けていきたいと考えている。
個人的なことながら、2015 年の 9 月にジェンダー研究所に特任リサーチフェローとして着任した。この企画は着任してすぐに担当したということもあり、至らない点も多々あったと思うが、IGS のスタッフから様々支援を得て無事開催できたことをうれしく思う。

IGS 特任リサーチフェロー

仙波由加里
2016 年 3 月

4IGS Project Series 1
Choice and Consent in Prenatal Testing

Choice and Consent in
Prenatal Testing in Australia

Catherine Mills, Ph.D.
Monash University

Abstract
In many liberal democracies, the moral principle ofreproductive liberty or choice has an unprecedented
ascendency

in

the

managementofreproduction,

especially in regards to prenatal testing and decisions
about selective termination. Drawing on qualitative dataon ultrasound screening in Australia, I show that notionsof choice are deployed in various ways, and in theprocess, do various things.

In particular, the “apparatus

of choice” positions women as the principal moral agentsin prenatal testing regimes, and the fetus as a kind of
moralboundary

responsibility

fromobject,while

deflecting

clinicalpractitioners.

moral

Further,I

consider whether a consistent and explicit consent
procedure for (non-invasive) prenatal testing is requiredin Australia, given the current lack of consistency inprocedures for ultrasound screening and cell-free fetal
DNA (NIPT) testing.

5

Catherine Mills
Choice and Consent in Prenatal Testing in Australia

1. Introduction
I’m going to talk primarily about a project that I
have been doing the last couple of years funded by
The Australian Research Council, which is the main
government funding source in Australia. It is a
project that I've been running with a colleague ofmine, Dr. Stephenson who works in Public Health atUniversity of New South Wales in Sydney.
It is partly an empirical project on obstetricultrasounds and we interviewed a number of womenand clinicians involved in the practice of obstetricultrasound. I’ll talk a little bit more about that in a
moment. But more generally, I’m interested indeveloping an approach bioethics that draws on the
tradition of continental philosophy. My work is
particularly influenced by Michel Foucault, the French
philosopher. So in some of my other work I use theconcept of biopolitics. I’m not sure how popular thatconcept is in Japan, but it’s become quite popular inAustralia and other places. And I have been usingthat concept to think through some of the issues
around prenatal testing technologies.
Now I will talk a little bit about what that conceptmeans in a moment. But basically, what I think isthat prenatal testing is actually inseparable fromwhat I call biopolitical decisions about who comes
into the world. So we make decisions, prenatal
testing allows us to make decisions about what we'regoing to do about a pregnancy. It varies on context,
of course, but it seems to me that there's a verystrong link between prenatal testing and terminationof pregnancy for fetal abnormalities. Because, one of
the key reasons for prenatal testing is to diagnose
fetal

anomaliesor

abnormalities.

In

different

contexts, this allows us to do various things. But
whatever that context allows us to do, the decisions
that we make are decisions about who comes into theworld.

6

IGS Project Series 1
Choice and Consent in Prenatal Testing

Now

in

bioethics,

thesedecisionsabout

pregnancies and termination are often seen as been
based on questions of individual freedom and right,
where freedom is understood in terms of individual orparental choice. So there is a very strong emphasis inbioethics on individual choice and we’ll also talk a bit
more about how that comes out in a clinical context
in Australia in just a moment. Now the framework ofindividual choice that we're talking about in bioethics
isprimarily

one

where

individual

choiceisunderstood as negative freedom, that is freedom
from interference. So the main imperative then is tomake sure that no one else is impeding the freechoices of individual.
I’m very interested in this this emphasis onindividual choice in prenatal testing decisions. But
I’m not going to approach the question of individual
choice in a standard way. I’ll take the standard way to
be concerned with whether the choices are reallygenuine choices, or with whether they are really freechoices or so on. I want to take a slightly different
approach which is to say, what effects does theemphasis on individual choice actually have? So what
are the social and subjective effects of that emphasis
on individual choice? So I’m going to draw on work ofMichel Foucault, the French philosopher, to draw out
the notion of an ‘apparatus of choice’.
So I’m going to argue that at least in theAustralian context, in relation to prenatal testing
there is something that we can identify as the
Apparatus of Choice. There's a very strong emphasison choice and this comes out in various kind of
discursive and material ways. And this apparatus
operates in particular ways to do particular things. So
we're interested in the effects that an apparatus ofchoice has.
And I going suggest that the first thing that we see

7Catherine Mills
Choice and Consent in Prenatal Testing in Australia

when we look at or approach this question of what an
Apparatus of Choice actually means, is that it reveals
a very complex, kind of interaction of affect, ethics
and normalization. In prenatal we get the threedifferent aspects of moral or ethical principles,
individual desires and emotions and the normalizing
aspect of prenatal testing operating together. As wellas this, though, I argue that the apparatus of choicealso works to reinforce existing ways and patterns of
discrimination.
The

most

obvious

one

is

the

patternofdiscrimination on the basis of disability, but there arealso more subtle ones based on socioeconomic status
and cultural capital. So that comes out in different
ways as well.
The thing that I am particularly interested in, in
terms of thinking about the effects of the Apparatus
of Choice, is mostly the effects for pregnant women.
Now I’m going to suggest that what it primarily doesfor pregnant women is make them the main orsometimes even the sole moral agent for decisions
about

prenatal

test.

So

it

deflects

moral

responsibility from clinicians and places the moral
burden of prenatal decision making on pregnant
women. Now on the one hand that’s a good thing,because we want women to be free and have theprerogative to make those decisions for themselves.
On the other hand, it means that the responsibility ofanyone else involved in that apparatus is notrecognized.
So let me just say a little bit about the context of
prenatal testing in Australia to begin with. The mostwidely used prenatal test in Australia is obstetricultrasound, which is performed in almost in every
pregnancy at the 12-week mark and the 18 to 20
week mark of gestation. Australia has – you may
know this already - but Australia has both a publichealthcare system and a private healthcare system.

8

IGS Project Series 1
Choice and Consent in Prenatal Testing

When it comes to ultrasound provision, mostly that isdone through private clinics, but at the same timesome of it is done in public hospitals, for poorer
women in particular. But private clinics primarily
provide ultrasound scanning in pregnancy. Those arestill subsidized by the public healthcare system, by
Medicare. So even when the scan is done in theprivate clinic, it’s subsidized by Medicare.
At the same time, if women go through the public
system to have their child, which a lot of people do,you will still go to a private clinic to have an obstetricultrasound, for the most part. Some women go
through the private system for their maternity care,in which case they have their own obstetrician, andtheobstetrician

might

perform

a

lot

more

ultrasounds during the course of their pregnancy but
these won’t necessarily tell you much about the fetus
apart from the fact that is alive.
In pretty much every pregnancy in Australia, there
is at least one ultrasound scan at the 20-week mark.
This has become a routine scan, which means it isvery well subsidized by Medicare. It costs very little.
For a lot of women, it’s actually free. The firsttrimester scan is not technically routine but almost
every woman has it. That’s done in conjunction witha maternal blood test to detect the levels ofhormones and so on in the blood. Some womendecide not to have this because they don’t want toknow about Down syndrome, but most women will
have it.
So ultrasound is the most common prenatal
screening test. But addition to this we have the kindof standard invasive tests like chorionic villus
sampling

andamniocentesis.

Most

recentlyinAustralia, we've also seen the introduction of NIPT, or
what's called NIPT, cell-free fetal DNA test. The
introduction of this in Australia was very different
from in Japan in that there's been almost no public
discussion on it. It’s just become available in some9Catherine Mills
Choice and Consent in Prenatal Testing in Australia

private clinics but not in others – no government
decision about the introduction of NIPT, there's nonational statement from the obstetricians and notmuch discussion about how it should be introduced.
There's lots of discussion amongst the obstetricians
about how it should be introduced into the current
regime of prenatal test, but there’s no public
discussion about it – almost no public discussion.
So as I said there's a very well established regimeof ultrasound screening at 12 and 18 weeks available
in both public hospitals and in private ultrasound orradiography clinics. And those ultrasound tests are
subsidized by the public healthcare system. There's
no subsidy for other screening tests like NIPT. So thecost of those is covered by the people who decide tohave those tests.
Now there are national guidelines for ultrasoundtesting provided

by the AustralianSociety of

Ultrasound Medicine and the Royal College ofObstetricians and Gynaecologists. But these are only
guidelines. And most obstetricians will say that they
are kind of baseline guidelines. They’re just minimal
standards of care. They don’t actually determine
what kinds of things are tested for in an ultrasound.
So they don’t actually –they don’t necessarily outline
what a clinic – any particular clinical test – will
actually look for. For instance, in recent years a
number of clinics have been – when they are testingfor Down syndrome level also mention the nasal
bone, which is being determined to be a soft marker
for Down syndrome. So as well as the nuchal fold at
the back of the neck they will mention the nasal bone.
But not every clinic does that. It’s not required in theguidelines and not every clinic would do it. Really,
there's a number of private clinics that lead the way –they will look for different markers in their scans andthat will probably eventually flow down to broader
practice. At the same time, though, there is an
ongoing accreditation process – anyone providing

10

IGS Project Series 1
Choice and Consent in Prenatal Testingobstetric

ultrasound

has

to

have

ongoingaccreditation in order to be able provide a service ofappropriate

diagnostic

standard.

And

that

accredition is provided through the Royal College ofObstetricians and Gynaecologists.
Another main question that is emerging at the
moment or that’s part of the conversation ofobstetricians in particular is just how the introductionof cell-free DNA testing should be aligned with theultrasound testing. It’s very unclear exactly how thattest fits with current practice, or what the added
value of that test actually is – what new information it
provides apart from those tests, who should berecommended to have that test. Cell-free DNA
testing, who will want to have that test and so on
those

things

are

a

large

conversationforobstetricians. But there's really not very much public
discussion about it. But I want to mention that when
I talked with obstetricians about it, one of the things
or one of the effects of that testing, of NIPT testing, isthat its changing the rationale for first trimester
screening itself. That has been understood primarily
as a test for Down syndrome. That’s changing with
NIPT

because that’s

what

NIPT

can

significantly higher rates of accuracy.
happening

do

with

So what'sis that the first trimesterscan isexpanding to cover a range of morphologicalcharacteristics or fetal structural characteristics andat the same time also becoming a test for conditions
that might emerge in a pregnancy. So it’s becoming a
predictive test for preeclampsia. So it’s starting to be
used

to

look

in

advancefor___pregnancy

complications, things not necessarily related to thefetus – the placenta for instance. So it’s changing ….
Now one of the things that I find very interesting
about the introduction of NIPT is that to have an NIPT
test, you need to sign a consent form. You need to beprovided with information about the test, you need toat least have some understanding or say that you

11Catherine Mills
Choice and Consent in Prenatal Testing in Australia

have

some

understanding

about

what

that

information is, and so on for informed consent.

But

the interesting thing is that you do not have to sign a
consent form for ultrasound.
NIPT tells you essentially the same information as
the first-trimester scan - but you don’t need to sign a
consent form for one of those tests and you do for theother. So it seems to me that there's an interestingquestion here about what the actual principled
difference is between these two approaches to
non-invasive testing. And if there isn’t any principled
difference, what should Australia actually do - would
it be better to have a coherent system and if so, of
what kind? We need to decide whether that shouldmean to introduce consent forms for ultrasoundtesting or get rid of them with the NIPT. Or perhaps
we should just kind of go with what's there …
To bring this back to what I call to the apparatus ofchoice, I want ask whether having an explicit
informed consent process for ultrasound would
actually diminish some of the more negative effectsof the apparatus. So that’s the question we’ll get to –that’s bringing those two questions of choice andconsent together.

2. Biopolitics
The first thing I want to do then, given mybackground in Continental Philosophy and Bioethics,
is actually establish the bio-political nature ofprenatal testing, so I’m going to talk a bit about theconcept of bio-politics. As some of you probably
know the idea of biopower derives from the work ofMichel Foucault, in particular, his book The History of
Sexuality, in the first volume. There's a very shortsection at the end of that book where he talks aboutthat concept. And he argues at the end of that book,that during the 18th century there was a change inthe way in which power operated. But he argues that12

IGS Project Series 1
Choice and Consent in Prenatal Testing

there became much less emphasis on sovereignty
and the power of the sovereign to make decision
about ending life basically. And he argues insteadthat the way in which power operated actuallychanged to a power that was focused much more on
fostering life, on making – or improving the health of
population – improving health and well-being, rather
than simply deciding on whether to kill. So he argues
that the ancient rite to take life or let live was
replaced by a power that focused on whether tofoster life or disallow it to the point of death. So thebasic idea of biopower is that it’s a productive power,that actually is interested in maintaining andpromoting both individual and population health andwell being. And he argues that there are two kinds of– two elements to biopower. Am I just telling you
stuff you already know? Is everyone familiar with bio– no, it’s okay?
So he argues in this book that there are two
aspects to biopower, one of which he calls disciplinary
power. So this is related to Foucault’s work on theprison system. And that of focuses on individual
bodies. It’s focused on making individual bodies act
in certain ways. The other kind of power that he talks
about though is what he calls biopolitics andbiopolitics not interested in individual bodies per se,
but interested in population well-being, population
health. One of the crucial things that happens inFoucault’s story is that statistics emerged as adiscipline. Once you have statistics you can actuallyknow things about large groups that you would nototherwise have known, because of the capacity tomake predictions on the basis of numbers basically.
So that’s part of the story that Foucault tells here
about the rise bio-politics. But he also argues
throughout the first volume of History of Sexualitythat biopower, which means both discipline andbiopolitics, is tied to what he calls the deployment ofsexuality.

Sexuality

becomesreallycrucial13toCatherine Mills
Choice and Consent in Prenatal Testing in Australia

biopower; he argues that sex was a means of accessboth to the life of the body and the life of the species,
so he suggested that biopower is interested inindividual conduct in relation to sex, but also that it’s
important for population health because of its
population outcomes. So sex in Foucault’s picture isvery, very important in terms of tying together
discipline and biopolitics. He argues that sex isactually one of the four main axes if biopower – orwhat he calls the “socialization of procreative
behavior” is one of the four great strategic unities
that form the mechanisms of health focused on sex.
So he gives us a picture of various kind of aspects ofthe deployment of sexuality, and this socialization of
procreative behavior is one of them.
And he argues that this kind of socialization has
two aspects: A political socialization through what hecalls the responsibilization of the procreative couple– making them responsible for population well being.
Andsecondly,amedicalsocialization

throughpathologization. So the pathologization of certain
conditions, certain modes of conduct, making themabnormal essentially. So we have the emergence of
these concepts of the normal and the pathological.
So some of you might be familiar with the work of theFrench historian of medicine Georges Canguilhem,
who has a very interesting book called The Normal
and

the

Pathological,

which

gives

you

reallyinteresting history of the emergence of thoseconcepts and that history is important for Foucault’s
account of biopower, it seems to me, and particularly
this idea of pathologization.
Now obviously, the kind of things that we'retalking about when we talk about reproduction today
a vastly different from the picture of reproductionthat Foucault was working with. Foucault was
primarily

focused

on

the

19th

century

andreproductive practices have changed a lot since then.
And while I can’t give a complete picture of how

14

IGS Project Series 1
Choice and Consent in Prenatal Testing

those have changed, partly because it would take avery long time, partly because it would be impossible
anyway, I think there are a number of things that areworth pointing out. The first one of these is what I’mcalling the technologization of reproduction. So
obviously depending on your concept of technology
this could be as broad or as narrow as you like, but
technologization is something that’s been happening
in reproduction for either a very long time depending
on how you understand technology or a shorter time.
But either way one of the crucial turning points I
think in this technologization is the development of
IVF. IVF allows us to precipitate fertilization outsidethematernal

body

and

this

has

enormous

consequences. It then leads into the second greatchange, which is that of commercialization. So,commercialization - which refers to the developmentof oocyte markets, the development of the sale ofreproductive tissue of various kinds and ultimately,
the development of the commercialization of the
products of reproduction in surrogacy - all of thesepartices are in some ways linked back to IVF.
So I think IVF is a really crucial turning point in thetechnologization of reproduction. The third thing that
I think has changed is this – in reproductive practices
there is a very heavy drive toward normalization andI think prenatal testing actually plays a really crucialrole here and in particular obstetric ultrasound, justbecause it’s one of the oldest ways of testing the
fetus available. And by normalization I’m drawing on– again I’m drawing on Foucault’s work. So Foucault
talked a lot of normalization both in his book,Discipline and Punish, and in his work on biopower.
One of the central characteristics of biopower is that
it is a normalizing power, it works through norms
rather than primarily through the law and legal
institutions. So in Foucault’s picture of biopower,sovereign power worked through law, while biopower
worked through norms and biopower is ultimately

15

Catherine Mills
Choice and Consent in Prenatal Testing in Australia

intrinsically normalizing, which is to say that ittries to make things normal. That’s the simplest
articulation of that. It’s interested in the constitutionof a normal in various ways, identifying the normal
and the abnormal, and potentially eliminating theabnormal.
And

I

ultrasound

think
is

in

terms

reallyaofprenatal

preeminent

testing,

normalizing

technology, that’s what it does. It works in two
different ways to normalize fetuses – firstly, it works
to generate, it helps to formulate knowledge of what
is normal– ultrasound is crucial to the generation of
normal range parameters. You couldn’t understandnormal fetal development without ultrasound. That
was a really groundbreaking moment in terms ofunderstanding fetal development, just being able tosee the fetus, because otherwise that kind ofknowledge just wasn’t available. So in a way
ultrasound is normalizing just because it allows us tounderstand the norms of fetal development, the kindofpatterns

ofnormaldevelopment

versuspathological or abnormal development.
But it’s also normalizing in a negative way whenprenatal testing or ultrasound in particular has
become tied to termination of pregnancy. This is akind of negative normalization, if you like, whereby
the production of normal range measurements has
then been mobilized in particular ways or embedded
in a social context and a legal context, whereby theabnormal has been eliminated through terminationof pregnancy. So this control of the abnormal is akind of negative aspect of normalization or anegative side to normalization I think. so that’s thekind of double aspect to the way in which ultrasoundis a preeminent normalizing technology.
Now the way in which ultrasound actually works
today is that it also necessarily operates within acontext of the medical management of risk anduncertainty, so there's questions about risk in

16

IGS Project Series 1
Choice and Consent in Prenatal Testing

relation to Down syndrome, there's questions of
uncertainty because ultrasound is not actually adiagnostic technology, its primarily geared toward
identifying soft markers for various conditions whichthen can be diagnosed using other technologies.
But there's also other aspects to uncertainty
where, when we talk to a lot of the obstetricians andsonographers,

they

tell

storiesabout

seeingsomething that they think might be a marker for afatal anomaly but they don’t know, they don’t
actually know what it means. They don’t know if it’s arisk factor because they just don’t know whether it’s
actually part of normal development or whether it’s
an indication of something serious.
So, there's a lot of uncertainty in obstetricultrasound and related to this question of the
management of risk. So there's a very strong desireon the part of sonographers and obstetricians to getclear pictures or what they call beautiful pictures,
which means technically very clear, because thathelps you say what is wrong and what isn’t. But at
the same time some images or some indications ofthings just elude certainty because they just don’tknow what they even mean. So there's a lot of
uncertainty in that.
On of the things that I want to emphasize intalking about normalization is that normalization
itself isn’t geared toward the eradication of thenormal – of the abnormal, sorry. It’s geared toward
themanagement

of

the

abnormalandtheidentification of it but normalization in and of itself
does not – in Foucault’s formulation at least - doesn’t
require that the abnormal be eliminated. It doesn’t
actually determine what we do with the abnormal.
What's interesting then is this question of what Eva
Kittay calls the desire for the normal. So we have thisreally strong desire for the normal. And I’m not sure
where that comes from, we can talk where – whatmight be the kind of drivers of this desire for the17Catherine Mills
Choice and Consent in Prenatal Testing in Australia

normal, but I think there's a very strong kind ofaffective commitment to ideas of normal – of thenormal. So it’s that desire for the normal that
actually kind of leads to decisions around terminationof pregnancy, that drives the elimination of theabnormal, if you like.
Now what I think is really interesting in relation toultrasound and the context of ultrasound testing inAustralia, is that this desire for the normal ischanneled through ideas of choice. Now as we said
before what we’re interested in is choice and thisApparatus of Choice, and so there's a very strongemphasis on choice but somehow the decisions madein that space of choice are often decisions that reflecta desire for the normal. So this desire for the normal
somehow gets channeled through choice.
So I think here we see that there's a very strong
and very interesting kind of connection between an
emotional attachment to the normal, various moral
principles or ethical principles around patient choice
and autonomy and at the same time this kind of –this process of normalization that happens throughultrasound screening. So that’s where I think we geta very interesting mix of things going on. And it
seems to me that there's a lot more theoretical andempirical work to be done just teasing out thatparticular nexus of emotional – or emotion ethics andnormalization.
3. Apparatus of choice
I realize I’m actually kind of talking a lot of what
we found out in this study without actually telling you
much about it. So let me back step a little and tell youa bit more about the study we did. So as I said thiswas a study funded through the Australian researchcouncil and undertaken by my colleague Niamh
Stephenson and with some research assistants along
the

way.

It

was

primarilyaqualitative

andphilosophical study of obstetric ultrasound. I should

18

IGS Project Series 1
Choice and Consent in Prenatal Testing

say

that

hasn’tfinished.

We've

finished

thequantitative data gathering but the philosophical part,my responsibility, is still very much ongoing, partly
because I have become obsessed with fetuses, you
might say. I find the fetus the – and questions aroundthe fetus very, very interesting as really there are alarge number of bioethical questions around thefetus and around ultrasound that really just have notbeen discussed at all.
So I have become very interested in that, so it’songoing.
In any case, our interviewees were recruited fromboth private clinics and some public hospital settings.
We undertook semi-structured interviews as well as
observations of ultrasound scans. In total 26 women
were interviewed, either after their 12-week nuchaltranslucency scan or after the 20-week morphology
scan in a couple of cases after both when womenagreed to do that.
We

also

then

went

on

to

interview27

professionals involved in the provision of ultrasoundinobstetric

care.

This

included

about

16

sonographers and then the rest made up ofobstetricians,

genetic

counselorsanddisability

advocates. The primary aim of that project was toaddress the question of how ultrasound impacts onquestions about the moral status of the fetus. So how
people thought about the fetus, how they felt about itand how they kind of approached questions or
thinking about termination. As it happened, I mean,none of the women that we interviewed wereactually– we didn’t – we don’t know if they had
terminations, they may well have. So we weren’tinterviewing after terminations which would be areally interesting project to do. But thinking about or
asking about their kind of approach to ultrasoundtesting, what they thought was going to happen in –what they wanted from it and so on.
Now what's interesting is that we didn’t actually

19

Catherine Mills
Choice and Consent in Prenatal Testing in Australia

set out to ask people about choice in that study. But
in the transcripts it very quickly became evident that,that was the kind of principle organizing idea, if you
like. The way in which people thought about
ultrasound and prenatal testing was through the ideaof individual choice. It’s in all sets of transcripts,
whether its women or professionals, there's a verystrong emphasis on choice. So I wanted to then think
about what this emphasis on choice was doing. Now
it’s not surprising in some ways that choice was soheavily emphasized. I mean it’s -- this emphasis isvery consistent with both a kind of broader politicalcontext of liberal democracy and of liberalism moregenerally, where there is a emphasis on individual
choice, but also is consistent with the bioethical andbiomedicalemphasisoninformed

choiceandinformed consent. So that’s what we see in a lot of
medical or biomedical practice is a – is this kind ofemphasis on choice.
At the same time though that while there wasstrong emphasis on choice, one of the things that
became very clear very quickly is that clinicians andother professionals were very worried that women
weren’t sufficiently informed when they were making
their decisions. So there was a very strong emphasis
on women being insufficiently informed and this istied up with the idea that they weren’t making properchoices or properly framed choices, genuine choices.
In particular, they were worried that women didn’t
appreciate that ultrasound is a medical examination.
So this is one of the – it was a kind of very interesting
moment in the study when one of the people who
was helping – or one of the clinicians who was
helping us recruit women for the study wascomplaining vociferously to us about how women
were coming in without any understanding that thiswas a medical test. They would come in thinking that
this was a social occasion, they would bring theirfamilies. It was really – for him it was a really big

20

IGS Project Series 1
Choice and Consent in Prenatal Testing

worry that women just didn’t understand that thiswas a medical exam – a medical test. And this worry
was then repeated a number of different times and indifferent ways throughout the interviews.
So there was a concern that women weren’t
informed, they didn’t appreciate that ultrasoundscreening is a medical examination, that it has
potential consequences that they need to makedecisions about and those decisions might be quitedifficult. So that having an ultrasound scan mightlead to bad news. Or bad news that women had tomake decisions about. The clinicians often felt thatwomen just didn’t know enough about that. At thesame time, following the ultrasound tests, theclinicians also very strongly valued non-directiveness.
I mean this is very consistent with what we would see
in bioethics I think. So they strongly valued
non-directiveness when an anomaly was found. So
then it’s just about information provision, such thatthe decision to terminate was understood or could beunderstood as an expression of women’s autonomy.
So that was very important for them that thisdecision could be understood as an expression of awoman’s autonomy or her choice.
In particular, there was a strong emphasis that it
was a woman’s decision whether or not to terminate
any pregnancy following an indication of fetal
anomaly, with the caveat or with the limitation that
not all requests for termination would be allowed. Soeven if – even in a legal context where it might belegally permitted, there were some occasions when
the hospital, in the public system in particular, would
say no, that they wouldn’t perform a termination or
they

would

be

worriedabout

performingatermination for that particular reason.
One case that I've written about in another paper
is a case where a woman had – at her 18-week scan
– her fetus was discovered to be missing its left handand – this was a public hospital scan – when it was

21Catherine Mills
Choice and Consent in Prenatal Testing in Australia

confirmed that the fetus was missing its left hand,
she wanted to have a termination. The hospital that –the doctors she was dealing with were very
uncomfortable performing it and this was at 18
weeks, very close to the 20-week mark which in New
South Wales (where this case was) is a kind of ‘moral’
cut off point, in a way. It’s not legally – legally they
could have performed the termination but they werevery uncomfortable with doing it at that stage ofdevelopment for that patient.
And there would be other cases of – I’ve heard
cases of termination for things like cleft palate or
cleft lip, where the hospital ethics committee would
be very uncomfortable allowing a termination for
those reasons. But in a number of states at least abortion law in Australia is confusing because it
varies by state, so every state in Australia has adifferent abortion law, and none of them areconsistent – this would be legally possible. But even
if its legal sometimes there are circumstances when
the doctors don’t necessarily want to do.
So, okay, so now we're getting onto the questionof the Apparatus of Choice and how we might like tothink about that. So my question that is what – how
might this emphasis on choice actually be thought
about and how might we understand the effects ofthat emphasis on choice. Now interestingly there is astrong concern in feminist bioethical literature thatchoices

made

about

prenataltestingcanbeunderstood as genuine choices. This is actually aquestion of whether women are sufficiently informed
and so on. So there's a lot of – quite a number of
papers on whether prenatal testing and decisions invarious context actually count as genuine choices.
There's also an argument that says, well, in fact
there can never be genuine choices because we just
don’t know what a life with a disabled child will be
about – will be like. So there's just no way thatwomen can be making informed choices because it’s

22

IGS Project Series 1
Choice and Consent in Prenatal Testing

not possible to be informed about what your life will
be like with a disabled child. So disability of the kids
per se will in fact – I mean people could be better
informed at least than what they are.
In any case I’m not going to take that approach.
I’m not going to question whether it’s genuine choiceor not. I think that’s a very difficult question andprobably impossible to actually answer in some ways.
Instead I’m going to focus on this question of what
the emphasis on choice actually does and how can weunderstand the effects of this operation of choice. So
I'm going to propose the notion of an Apparatus of
Choice. And that obviously raises the question ofwhat an apparatus actually is.
So again I'm drawing on Michel Foucault’s workand his idea of an apparatus with this dispositif which
he develops in some detail – well, not in a greatamount of detail I must admit, though he gives anoutline and I'm going to kind of use that outline. So
just to give you an idea of what I mean by anapparatus I would say that’s it’s a relatively cohesiveandcoherent

conglomerationofmaterial

anddiscursive element that shape but don’t determine
behavior in any given context, so to relatively
cohesive bit of a material discursive circumstances ortechniques. And I think one thing to keep in mind isthat an apparatus operates differently in different
contexts but it will always have some consistentcharacteristics such that we can identify it as aparticular apparatus as opposed to another.
So Foucault suggests that there are three things
that we can focus on to trace or outline an apparatus
and he suggests so that the three axes of anapparatus could be subjectivity, knowledge andnormativity. So we can look at those kinds ofelements to get a picture or an outline of anapparatus, and in particular,

in this case an

Apparatus of Choice. So in relation to the apparatus
of choice we’ll just quickly run through what those23

Catherine Mills
Choice and Consent in Prenatal Testing in Australia

three things might suggest about the Apparatus of
Choice. So in relation to subjectivity, I think theapparatus of choice presupposes subjects capable
not only of making choices but of making rationallyjustifiable choices. So it’s a question of rational moral
agents – this becomes very important, being
sufficiently informed, being sufficiently rational to
make certain kinds of choices as opposed to others.
So we shouldn’t just be making choices randomly
based on our emotions and so on, they should berationally justifiable choices.
In terms of the axis of knowledge, in relation to
the Apparatus of Choice, as I've emphasized there's
a very strong emphasis on this question of being
informed. And in the Apparatus of Choice thisprimarily means in terms of being informed in termsof the medical view of an anomaly. So trying tounderstand the medical information about any
particular diagnosis or anomaly, there's an emphasison the delivery of that information, there's not
actually that much discussion about, for instance, thelife stories of people who have raised disabledchildren, which for the disability advocates was quite
a problem. Actually, in this question of who has whatknowledge in the Apparatus of Choice, its interestingthat certain kinds of knowledge was seen as
important by some people, while others would see it
as not important or just not registered at all. And as
I said before there's a very strong question about the
management of uncertainty and risk in the Apparatus
of Choice. So there's lots of discussion about the
managementof

uncertainty

andquestionsofepistemological uncertainty, knowing what's what,knowing what the truth of the matter is in relation toan ultrasound finding and so on. So my colleague
Niamh Stephenson has written an interesting paperon the ambiguity of ultrasound images and thisquestion of how we deal with the question of
uncertainty.

24

IGS Project Series 1
Choice and Consent in Prenatal Testing

Now third is the axis of normativity. And here I
think, in the Apparatus of Choice we can see thatchoices are understood as needing to be free.
They’re supposed to be free choices. And that ismeant to be or that is understood as meaning not
being impeded by others. So we're operating withliberalnotionsoffreedomandautonomyas

independence and so on and there's a very strong
individualistic focus. It’s a question of individuals or
particular individuals making rational choices basedon sufficient information and not being overly
influenced by others in those choices. So that’s thekind of thing we're talking about.
So then what does this Apparatus of Choice do?
Well, I’m going to run through three particulargroups of people in relation to the Apparatus of
Choice. The first one of these is clinicians. And this isvery interesting actually or I think is very interesting.
Because, a lot of the clinicians we talked to wereactually

very,

very

reflective

about

how

this

emphasis on choice actually affects their work. Not
all of them, I must admit, but a number of them werevery, very reflective about how choice actually affects
their kind of positioning. And basically I would argue
in relation to clinicians that the Apparatus of Choice
allows clinicians to adopt a position of moral
neutrality. It allows them to adopt the position ofsaying it’s your decision, you make that decision, you
carry that responsibility. Now for some clinicians thatwas good. They were happy to see themselves in thisway, and I quote, “We are just service providers.”
That’s the understanding of some clinicians, is that
their job is to provide a service. What happens on thebasis of that service, there service being ultrasoundtesting, what happens on the basis of that is up to
someone else. It’s not their responsibility.
But others were somewhat bothered by that kindof approach, and they thought that in fact this was a
way of kind of giving over or not taking on, or

25

Catherine Mills
Choice and Consent in Prenatal Testing in Australia

avoiding

their

moral

responsibility.

Theirresponsibility as carers –of medical carers to actually
help women make those decisions in various ways.
So some people saw just – their job as just a matterof service provision and this emphasis on choice
allows them to adopt a position of moral neutrality
and others saw that as problematic, that in fact, it
forced them into a position of neutrality and moral
abdication when in fact they would like to be moreengaged.
Now one of the other things that came throughvery strongly was that clinicians were either reluctant
or unable to publicly reflect on the moral ambiguity of
their roles, even if they wanted to sometimes. So
some clinicians had actually tried to publicly engage
with this question of the moral ambiguity of prenatal
testing, they had written to sort of parenting
websites and so on, but their writing had not been
published. But a lot of them just really didn’t want tohave this conversation at all. In particular they don’t
want to have a conversation about prenatal testingand its moral ambiguity in Australia because thatwould entail having a conversation about abortion
and abortion is just so politically difficult that no one
wants to open that box. That’s essentially what it’s
about. No one wants to kind of provoke a publicdebate about abortion in Australia, because of theway that could go – it might make things much worse
for clinicians if there is such a debate.
So in general, then, I would argue that the
Apparatus of Choice allows clinicians to avoid themoral ambiguity of their practice and project
responsibility for decision making around prenatal
testing and termination onto women. So theyhandover all the moral responsibility for prenatal
testing decisions and termination decisions onto
women, so women have to carry that burden of
moral responsibility. So I've just put up a couple ofquotes there from some of the more reflective

26

IGS Project Series 1
Choice and Consent in Prenatal Testingobstetricians and clinicians when they suggest that infact things have not got better necessarily withultrasound scanning, that in fact, it’s just made it
more difficult for women.
So the next group is women. So the question of
how women fit into the Apparatus of Choice, I think,
is really important. So I argue that in the Apparatus
of Choice women are cast as responsible moral
agents capable of informed decision making and whobear primary culpability for their actions. That seems
to me pretty kind of uncontroversial and pretty
standard that women – pregnant women - are seenas the primary moral agents for their decision
makinginrelationtoprenataltestingandtermination and are also the ones who bear primaryculpability for that – for that decision or their actions
following that decision.
At the same time though some women wereactually understood, it seems to me, as being
fundamentallyirresponsible,

both

culpablebutincapable of informed decision making because theywouldn’t or couldn’t understand the significance of
prenatal testing as a medical examination for
instance. But they were nevertheless seen as being
culpable for that failure.
So the two groups of women who particularly fell
into

this

categorization

as

being

–

of

being

fundamentally ir-responsible - were women who
were insufficiently informed about the test, theultrasound test to begin with, they just didn’t
understand what it was about, or women who wereinsufficiently respectful of the medical context of that
test. So they – those two groups of women were seen
as being irresponsible in some way or another. And
these are different groups of people actually, they
break down differently in some ways. So often thefirst group of people, the ones who were justinsufficiently informed might be women who don’t
speak English as a first language, for instance.

27

Catherine Mills
Choice and Consent in Prenatal Testing in Australia

So they are necessarily irresponsible, in a way,and I’ll say more about that in a moment. But theother group of women who were kind of justinsufficiently respectful would be women – thesonographers, in particular, complained about these
women. One sonographer in particular complained
about these kinds of women. They would be women
who came into the test with their friends, for instance,and just didn’t engage at all. They were much moreinterested in talking about their shopping expedition
than seeing pictures of their baby on the screen. So
they were just not really kind of tuned into or
switched on to the – to what was going on in terms ofa medical test. It was all – for them it was much morekind of a social occasion to see – for everyone to see
the fetus or wanted their family to see the fetus orreally they were just kind of very blasé about thewhole process.
So as I said, elaborating on the first group of
women who were just seen as being fundamentallyirresponsible, as I said there's a very strongemphasis on informed choice or the information
provision.

Ishould’veemphasized

this

more

beforehand. But what's interesting about the factthat there is no – because there is no consent processfor

ultrasoundinAustralia,

no

one

takes

responsibility for actually providing that information.
Okay? So no one – even though there's a very strongemphasis on individual – on informed choice, no one
takes

responsibility

foractuallyprovidingtheinformation before women have an ultrasound test.
So the person who people think – or someclinicians think - should provide information is thegeneral practitioner or the family doctor who refers awoman to the ultrasound service. But they’re verybusy. They have 15 minutes in which to do all thework that they have to do and there's no set guide forthe kind of information that they should provide
because there's no consent process. So they don’t

28

IGS Project Series 1
Choice and Consent in Prenatal Testingtend to actually provide women with the information
about ultrasound beyond saying that it’s a test for
Down syndrome. Often the conversation is along thelines of – this is a test for Down syndrome, most
women have this test, do you want to have it? Thatwould be the kind of level of information provision.
So the main source of information for women is
actually the websites of the clinics themselves. So
many of the clinics actually have quite informative
websites about what ultrasound examinations will
actually tell them about their baby. And that’s great,
if you read English and have access to the Internet,
okay. But if you don’t read English and you – or you
don’t have easy access to the Internet then there's
just no way you can actually be the kind of informed
person or informed moral agent that the Apparatus of
Choice is requiring you to be. So that’s why I think it
casts some women as fundamentally irresponsible.
In that context, they’re failing to be responsible – thekind of responsible agents that they’re supposed tobe, but at the same time they are still seen as
culpable

for

that,

even

thoughthere

arecircumstances that they just couldn’t be responsible
in, if you like. So they’re both irresponsible andculpable.
So that’s I think – that’s the very problematic endof the emphasis on choice I think. Okay, so, women –so a few further aspects of the characterization of
women as moral agents. So as I've emphasized
there's a very strong emphasis on the control of
information. But the lack of consent process means
women are made responsible for their own conditionof being informed and there are problems with that.
At the same time there's also other aspects thatcome out in the comments of sonographers inparticular. So there's a question of a woman’s control
over her body. So the ideal woman coming into an
ultrasound in the transcripts from sonographers isthin but not too thin, her bladder is full but not too full,29

Catherine Mills
Choice and Consent in Prenatal Testing in Australia

her baby is active but not too active, if it’s too active
they can’t get good images, but it’s not active
enough then they kind of worry about whether it’sokay, and a woman has to come back and it takes
ages and so on.
They need the baby to move in various ways, theyneed it to roll over and present its face to them, forinstance, and if it doesn’t do that then there aretechnical problems and they have to send womenaway and she has to come back and so on. So ideallythey want a patient who comes in with their babyfacing upwards, who will roll over at the appropriate
moments so they can scan its spine and then be on
their way. So that’s their ideal woman.
She’s thin because obese patients are muchharder to get clear images of from, but sometimes athin – a very thin woman is difficult as well because
they just can’t tell for instance whether – if its fallingoutside the measurements for fetal growth they
don’t know whether that means that’s just because
she’s really thin or whether there's something wrong
with the baby. So too thin is not so great either.
But one of the things that I found particularlyinteresting was this emphasis on the control of awoman’s emotion. So as I said – as I suggested formany sonographers the ideal woman having an
ultrasound is concerned but not anxious. So theyoften complained about the super anxious women
who came and there's just nothing you can do toreassure

them

and

they’reconstantly

askingquestions for reassurance and so on.
These were not women that sonographers liked
very much because it meant they were being
constantly interrupted and couldn’t get their job
done efficiently. But at the same time they wantthem to be engaged but not demanding, they wantthem to not come in and just be kind of blasé andunconcerned about the fetus, they want them to beconcerned about their fetus but not anxious. So –30

IGS Project Series 1
Choice and Consent in Prenatal Testing

there's a kind of tight line that women have to walk interms of controlling their emotions.
So one sonographer, was particularly talkative
about the kind of ideal patient and she was sayingthat the super anxious ones are really difficult
because you just can’t get them to calm down andthey’re constantly asking for reassurance, and nomatter what you tell them they just don’t stop. And
then the other ones that she said that women who
come in with their girlfriends from their shopping
expedition and they’re a nightmare, because they
just kind of talk to each other and they don’t engage
with the sonographer at all. So for her they were her
least favorite women. And I think the control ofemotion links back to this question of rationallyjustifiable decision. So it’s about being a rational
agent that you sometimes have a control over youremotions and so on.
One of the other interesting things that comes out
in the interviews around the control of emotion is aquestion of the relation between the sonographer
and woman and the delivery of information. So oneof the difficult problems for sonographers is when – ifthey see some kind of indication at the beginning of
the test that something’s just not quite right, one ofthe difficulties is knowing what to do about that. So
you don’t – they don’t want to provide information to
women too early and upset them, because if awoman starts crying they can’t get very good images
because she’s moving too much. So you don’t wantto – a woman who is weeping because you can’t get
good images. At the same time they feel it’s bad tojust go through the whole scan saying, “Yes, it’s all
fine. It’s all okay,” and then get to the end of the scanand say, “Well actually, it’s not so good. There's someindications of problems here, because that seems a
bit deceitful or duplicitous So, there's a real problem
for sonographers how to control a woman’s emotion
as well and to control that kind of communication

31

Catherine Mills
Choice and Consent in Prenatal Testing in Australia

between them and women patient’s being scanned
So the third group, the fetus – the fetus itself.
What I think the apparatus of choice does to fetuses
is turn them into boundary objects. So ‘boundary
object’ is a term that I’m taking from an interestingarticlebyClaireWilliams.

And

it’s

basicallysuggesting that it’s something that kind of sits on theborder of the moral community, if you like. That’s myunderstanding of it. That it’s something that is on theboundary of the under – our understanding of what's
a person, what's a human. Some fetuses will become
persons and some won’t. So it’s an object that we
make decisions about, that we make choices about.
There's nothing necessarily inherent to a fetus thatwill determine that it’s a person or even if they wereit doesn’t – that inherent characteristic - doesn’t
determine its fate. It’s something about which we
can make choices, certain kinds of choices. And in myview these choices are choices about the differential
valuation of certain kinds of lives as opposed toothers. So it’s an understanding of which life – it’s aquestion about which lives matter. I mean that’s theblunt way of putting it - how much do we value somelives as opposed to others? that’s essentially whatthat question comes down to I think.
So the other really interesting thing is that it
makes this question of what lives matter and thenormative status of the fetus, the question ofwhether it kind of sits in moral community or not, it
actually makes those questions dependent on thetechnology of ultrasound. So ultrasound actuallythen comes to play this very, very important andinteresting

role

in

the

constitution

of

moral

community or the constitution of the category of theperson. Ultrasound is very, very deeply embedded orintertwined in this kind of in the production of
persons, if you like. So that’s what I think is reallyinteresting about ultrasound or one of the things that
I think is really interesting. And obviously this32

IGS Project Series 1
Choice and Consent in Prenatal Testing

intersects with questions about disability and how wethink about disability more broadly in any givensocial context. And one thing to emphasize then isthat – this is a point made by Nancy Press in a very
interesting little article - that what matters here is
not only the choices made but the choices that are
actually made available to women. What kinds ofchoices actually even register as rational decisions?
What choices are possible?
So sometimes, for instance, women will make adecision to continue a pregnancy even in the face of
information about a severe fetal anomaly. For many
clinicians that decision does not count as a rational
decision. They just can’t understand that as adecision that someone can rationally make. And I
think that is about – this kind of question of the social
structures of choice, there's something to be
explored further there about the kind of social
structures that make some decisions possible andnot others. And I think the Apparatus of Choice tends
to obscure this particular, kind of, working or
structuration of choice by making it all about
individual choice or individuals.
4．Choice and consent
Okay. So I think I have now covered thediscussion of the Apparatus of Choice. But I want toturn briefly to the emergence or an introduction ofcell-free fetal DNA testing in Australia. Because as I
said in the beginning, this I think is putting pressure
on these questions about choice and consent. So
we’ll talk – I’ll talk briefly about that. So ultrasoundhas been the primary non-invasive screening test inAustralia for a long time – for quite some time. Until
I think late 2012 actually -- its not entirely clear but
late 2012 I think was when NIPT was actually firstused in Australia. And initially late 2012. And initiallysamples were collected in Australia and then sent
back to the USA. Okay? So all samples collected were33

Catherine Mills
Choice and Consent in Prenatal Testing in Australia

sent to the USA for actual testing. But recently theVictorian Clinical Genetics Services has actuallydeveloped its own tests, so the actual testing can bedone in Australia, and that test is called ‘percept’. So
there's – you probably know there's various – there's
a range of names for this test.
I think the common one is Harmony, and Australia– the Victorian Clinical Genetics Services is calling
their test ‘percept’. Now what's interesting about thistest is its very high rate of accuracy, especially for
Down syndrome, which is its greatest appeal. So it
has a greater than 99%. It’s about 99.7% I think or
99.6% rate of accuracy for Down syndrome. But at
the same time it’s still not a diagnostic test. It doesn’ttell you definitively whether your child actually has
Down syndrome or not or another trisomy conditions.
So what this test actually tests for is the threetrisomy conditions, trisomy 21, 18 and 13. It also canbe used to test for Turner syndrome, which is a sex
chromosome problem and it can also tell you whether
your child is going to be a boy or a girl. So it’s not avery vast range of things that its used to test for. I
think that’s five or six things and that’s all.
So it has a high rate of accuracy though,especially for the trisomy conditions. Given this, thereal question that is emerging in or has emerged inAustralia amongst clinicians is just how the test
should actually sit within the ultrasound scanningregime. They still, for the most part, recommend
having a 12-week ultrasound because the ultrasounddoes other kinds of things as well as test for Down
syndrome. So it can tell for instance whether somestructural defects will be evident at the 12-week
mark, as I said before, there's more evidence thatultrasound at 12 weeks can be used to test forpreeclampsia and so on. And so that ultrasound is
still strongly recommended in Australia.
So it’s not as if NIPT will actually replace the
12-week ultrasound. That’s not going to happen. And

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especially not since it costs about – and still costs
about $500 in Australia and that is not subsidized by
Medicare at all. So that means that a woman, if she
wants to have NIPT, she will have to pay that money
herself. And there's not currently any discussion
either about including NIPT in the subsidized prenatal
testing regime so as I said she will have to pay thatcost.
The other benefit, of course, because it’s only ablood test it also involves no other – no dangers to
the pregnancy, which is its great advantage of amnio
and CVS. But again, if you want certainty, you still
are required to have amnio and CVS if you have aparticularly high risk factor for any conditions. And
CVS and amnio are still very useful because they test
for a wider range of things than you could get NIPT
testing for. So again if a woman has a nuchaltranslucency scan, has a high risk from that for Down
syndrome the question then emerges is well, should
she go and have an NIPT test or should she just go
straight to amnio?
Now it may be that she could just go to NIPT and
she would then be told that in fact there's a – it’s notvery likely that her fetus will have Down syndrome.
Or if she gets a high risk then she will still have to go
to amnio anyway to get a definitive diagnosis. But if
she only goes to NIPT there may be other conditions
that are then not being tested for, that would show up
in an amnio. So she may decide even then that she
has to have an amnio to really get a definitive
diagnosis to rule out other kinds of defects that might
be generating the risk factor in the first place.
So it’s very difficult to know which test is actually
beneficial in any given circumstance. So there's areal question about just how it will even beincorporated and how it should be. And at the sametime there are other tests as well that will test forvarious other conditions, microarray testing, which
will test for things like Angelman syndrome and so on,

35Catherine Mills
Choice and Consent in Prenatal Testing in Australia

which again are not tested for in NIPT. So there's areal question there.
But what I find interesting is the fact that while
NIPT requires patient consent, and the standards ofinformed consent are supposed to be applied – I say‘supposed to be’ because they are in principle applied,
but we don’t know quite what happens in practice the same kind of standard doesn’t hold for ultrasoundtesting even though it is also a non-invasive testing
technology.

So

one

might

imaginethat

two

non-invasive testing or screening technologies havethe same kind of standards for informed consent or
informed choice. But in fact we have a contradiction
whereby one requires informed consent and one
requires simply informed choice. And as far as I cantell, there's no principled difference that justifies thiskind of contradiction between fetal DNA testing andultrasound. Instead it seems to me it’s just ahistorical artifact of the ways in which ultrasounditself was introduced, whereby that just came into
Australia – was introduced in Australia by first one
person coming from the U.K., introducing it in his
clinic and then it kind of took of. So that developed ina very ad hoc way. NIPT has also been introduced inAustralia in a very ad hoc way, and it’s just because
they are kind of not really under any kind of national
standard or national scrutiny that these systems
have developed, it seems to me.
So it seems to me that there's a real question
about whether Australia should actually have a more
coherent

systemofchoiceorconsent

for

non-invasive testing, and the question that I’ll finish
on is whether having an informed consent process forultrasound would actually help to ameliorate some of
the more negative effects of the Apparatus of Choicesuch as the casting of some women as fundamentallyirresponsible because they can’t or won’t take thetest seriously as a medical test.
They can’t access the information; they either can

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access it but won’t and so on. And so it’s thatquestion of whether having a consent process will
actually mean that someone takes responsibility forproviding information, the information that would
actually be necessary for making informed choices inrelation to ultrasound or whether it really – it just
won’t have that effect. I mean there's – I think
there's an interesting question there about whether
we should introduce some kind of consent process forultrasound or whether we should get rid of theconsent process for NIPT.
So I'm going to finish on that note and ask you totell me about the context in Japan.

Catherine Mills
Associate Professor at the Centre for Human Bioethics School of Philosophical, Historical & International Studies,
Monash University. She is also the founding co-cordinator of the Reproduction Research Network at Monash University.
Her area of specialization is bioethics, Feminist philosophy, and 20th Century continental philosophy. She has beenworking on a project on obstetric ultrasound, which involves qualitative data collection about this prenatal testing.

Her recent publications and articles are as follows:
Mills, C. 2015. Biopolitics: A Critical Introduction. Under contract with Routledge; MS to be submitted December
2015.
Mills, C. 2011. Futures of Reproduction: Bioethics and Biopolitics, Springer.
Mills, C. 2015. “The case of the missing hand; or, Gender, disability and bodily norms in selective termination”.
Special issue, ‘New conversations in feminist disability studies’, Hypatia: A journal of feminist philosophy, 30(1).
Mills, C. 2014. “Making Fetal Persons: Fetal homicide, ultrasound and the normative significance of birth”, Special
issue on international perspectives on birth, philoSOPHIA journal, 4(1): 88-107.

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What Do Women Want to Choose
in Prenatal Testing in Japan?

Azumi Tsuge, Ph.D.
Professor, Meiji Gakuin University

I am a medical anthropologist.

I mainly study

interrelation New Reproductive Technologies andSociety. Today I will give you information on prenatal
testing in Japan, and I would like to show the social
background that is relevant to Japanese unique
history with regard to prenatal testing.

Japanese Situation Regarding Prenatal Testing
The ratio of women undergoing prenatal tests otherthan ultrasound scanning in Japan is relatively lower
than in any other medically advanced country.
According to Sato, who was one of the leading
specialists on prenatal testing in Japan in the 1990s,
he reported that the incidence of maternal serum
screening conducted in the United States, the US isabout 167 times that of Japan, and the frequency ofamniocentesis in Germany was 10 times that of Japan
in 1999 (Sato 1999). Another research report showedthat only 3% of all pregnant females received prenatal
diagnosis

based

upon

maternal

serum

markerscreenings or chromosome analysis in Japan(Sasaki2011).

On the other hand, the fact is that many39

Azumi Tsuge
What Do Women Want to Choose in Prenatal Testing in Japan?

clinics and hospitals have been practicing ultrasoundscanning and abortion procedures in Japan. We
usually use ultrasound scan, which is not recognized
as a prenatal testing is.

And maternal serum

marker screening and cell-free fetal DNA in thematernal blood are also available though not many
pregnant women use them.

Cell-free fetal-DNA-based prenatal testing, so called NIPT started in 2013
in Japan. These are said to be non-invasive and are
not considered definitive test.

Amniocentesis andchorionic villus sampling are said to be invasive tests.
Total numbers of amniocentesis and maternal
serum screening in Japan increased between 1987
and 2012. However their total incidence is only 3% ofallpregnant

women.

ButinJapan,

latelythegovernment has emphasized the declining birth rate.
And the number of live births by age group, is shownin this figure. The number of live births is declining.
But the subtotal for maternal age over 35 years isincreasing.
The Japanese Government and the Japan Societyof

Obstetrics

andGynecology(JSOG-Japanese

OB/GYN Association) have emphasized that those areserious issues for Japan because they are related tothe increasing the number of infertile women or
couples, and may be increasing the ratio of fetus withchromosomal abnormality. The ratio of live birth by
women over 35 years old increases from 1950 to 2010.
Now you see why the Japanese government and theOB/GYN doctors worry about that from these figures.

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Choice and Consent in Prenatal Testing

As I already said, Japan has a unique conditionand situation regarding prenatal testing. For example,
the Expert Committee of Ministry of Health on Prenatal
Diagnoses issued the guidelines regarding maternal
serum marker test in 1999. It said that a doctor
doesn’t need to tell a pregnant woman on his own
initiative about the prenatal test using mother’s body
blood. Whenever I show this guideline at a seminar in
North America, people always ask me if it is my typo.
Then I said,” no, no, no, it’s correct. A doctor doesn’t
need to tell a pregnant woman about the maternal
serum marker test.”

The point of these articles are that introducing
NIPT will cause pregnant women to undergo the test
easily, therefore the number of abortion after the test
would be increasing. I was interviewed by several
journalists from the newspaper company in Japan at
my office. I asked them if you know how many
abortions are conducted in Japan annually before you
show the anxiety about abortions by results ofprenatal testing. A young journalist said, "I don’t know
at all." The Japanese total number of abortion –annual abortion number - is about 200,000 a year.
But now it's decreasing bit by bit, less than 200,000
abortions. I asked her, “do you know the number ofabortions after prenatal testing in Japan?” She said, “I
don’t know.” Then I said her, “you said that theabortion number would be increasing and become
problems if we introduce NIPT.” Actually, we don’tknow the precise number of the abortion after
prenatal test. The only 3% of pregnant women maybetake it. Among them, maybe 1% or 2% of them would
have positive results, then among them, about 90%
will abort. It is very few case to have abortion after
the result of prenatal testing.

41

Azumi Tsuge
What Do Women Want to Choose in Prenatal Testing in Japan?

When the NIPT was introduced, JSOG issued
guidelines. They stated that the test should not be
widely introduced into general obstetric prenatal
practice. The test should only be carried out on
pregnant women with an increased risk for fetal
aneuploidy, and conducting the test in mass screeningof pregnant women in general should be strictly
prohibited.
Here in Japan, more than 7000 NIPT were
undergone from April in 2013 to March, 2014. The
resultshowed

that

129

cases

among

7,740

pregnancies are trisomy 13, 18 or 21. Most cases were
negative through NIPT. It also showed that only 0.6%
of all pregnant women were affected by taking the test
and about 0.01% of all pregnant women had apositive result.

Japanese History with regard to prenatal tests
And let me show Japanese history regarding
prenatal tests. I wonder why Japanese people are
cautious about prenatal tests. I think Japanese standat the intersection of three historical lines. The threelines represent the population policy in relation toeugenics and the legal system of abortion, thefeminist

movement,

and

the

disabled

peoplemovement. I don’t have much time, so I just want topoint out the important parts. The Meiji Government
criminalized abortion under Japan’s first modern penal
code in 1880. The penal code was revised in 1907 to
make abortion a more severe crime. But in 1940
during World War II, National Eugenic Protection Law
was passed and it was modeled on the Nazi
sterilization law.
In 1948 after World War II, The Japanese
government reformed the National Eugenic Protection
Law, and renamed it to Eugenic Protection Act. It
legalized abortion under several conditions such as

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Choice and Consent in Prenatal Testing

the health concerns of pregnant women, eugenic
reasons including genetic disease of the pregnant
woman and/or her spouse, and pregnancy due tosexual assault. However, The penal code of abortion
was still valid.
In 1950, Eugenic Protection Act legalized abortion
to decrease the birth rate. Then women could haveabortions for economic reasons and social reasons.
And in 1966 a local government started the policy of
prevention of unhappy children. It reimbursed somepart of the cost of amniocentesis. In 1973, the antiabortion movement attempted to delete the term ofabortion for economic reason. Medical association
demanded abortion based on fetus abnormalities.
However, these amendments didn’t succeed because
the disabled movement and the women's liberation
movement are strongly against it.
In 1974, disabled movement criticized the policyof prevention of unhappy children. So it was reformed.
In 1996, the Eugenic Protection Act was reformed toMaternal

Body

Protection

ActbecauseEugenic

Protection Act discriminated against disabled people.
In the brochure regarding the policy of unhappy
children, it was described that children with disability
cannot grow happily, therefore local government
introduced the policy to “prevent the birth of unhappy
children”. The policy in 1970’s included paying
subsidies for amniocentesis to “prevent the birth of
unhappy children”. .Activists of disabled people rights
strongly opposed the policy.
Our research on Prenatal Test
In 2003, we conducted a questionnaire researchwith open ended questions and we had 375 valid
responses to the questionnaire and interviewed 26
women. Now we have launched a bigger research
project since 2013.

43

Azumi Tsuge
What Do Women Want to Choose in Prenatal Testing in Japan?

Conclusion
I would like to conclude here. First, medical
doctors emphasize that NIPS is non-invasive, so
pregnant women might have a tendency to choose tohave that test easily or without consideration. Second,
Dr. Mills mentioned about the making decisions or the
choice on prenatal test should be free. But many
Japanese believe choice is not free. The women standon intersection of the interrelationship of family andmedical doctors. In such a kind of system, some
women said that they tried to check the fetus because
it was late childbearing and it might be hard for themto take care of a disabled child when they would getold. If they give birth to disabled children, women
would feel guilty in the culture. Because Japanesewomen take the test to have to take responsibility forreproduction. JSOG issued the guidelines that doctors
should not actively advise pregnant women on
prenatal testing. If women would like to take the test,
a medical doctor says, “Oh it’s your choice.” In othercase, many women who didn’t take a prenatal test
said the reason why they didn’t is as follows. Because
her doctor didn’t explain about prenatal testing
directly but giving brief information by printing
papersWhen we ask in the questionnaire why you
didn’t take the test, many women responded, “oh, I’m
healthy. I’m all right,” “my doctor didn’t mention
about it. I think my doctor would inform me about thetest if I had a problem. Many women know what
prenatal testing is from the newspaper or themagazine, from the Internet. That’s an authentic
example of a typical Japanese attitude.

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References
Sago, H., et al. (2015). “Nationwide demonstration project of next-generation sequencingof cell-free DNA in maternal plasma in Japan: 1-year experience”, Prenatal
Diagnosis. 35: 1–6.
Sasaki, A., et al. (2011). “Low prevalence of geneti prenatal diagnosis in Japan”, Prenatal
Diagnosis. 31: 1007–1009.
Sato, K. (1999). Shusseizen Shindan: Inochi no Hinshitsu Kanri eno Keisho. Tokyo;
Yuhikaku.
Tsuge, A. (2010). How Japanese women describe their experiences of prenatal testing, In
M. Sleeboom-Faulkner ed., Frameworks of Choice: Predictive and Genetic Testing in
Asia, Amsterdam, Amsterdam University Press, pp.109-123.
Tsuge, A. (2015). Considering the Social Background of Prenatal Tests in Japan, The Meiji
Gakuin Sociology and Social Welfare Review, Meiji Gakuin University, 145:137-164.

Azumi Tsuge
Professor at Department of Sociology, Meiji Gakuin University.
She specializes in medical anthropology, she especially has working on the issues regarding correlative relationshipbetween reproductive technologies, life-science technologies and social issues.

Her recent publications are as follows:
Mimura K., Kokado M., Hong, H., Chang C., and Tsuge A, 2014. “Patient-Centered Development? Comparing
Japanese and Other Gynecological Examination Tables and Practices”, East Asian Science, Technology and Society:
An International Journal, 8(3), pp.323–345
柘植あづみ、2012. 『生殖技術―不妊治療と再生医療は社会に何をもたらすか』みすず書房
柘植あづみ・二階堂祐子、2014. 諸外国の出生前診断の状況とその背景『日本医師会雑誌』143(6),1166-1170 頁

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Comment

Prenatal Testingfrom a Legal Perspective
Marcelo de Alcantara Ph.D.
Ochanomizu University

My area of expertise is law, particularly family law. So I am not sure if I will
be able to contribute to the discussion on these ethical and social issues. But
I would like to ask some questions as well as make some comments focusing
on the legal issues related to prenatal testing.

Choice and Consent
Today's seminar is entitled “Choice and Consent in Prenatal Testing”, so the first questionthat comes to mind is “what is the difference between choice and consent”, between“informed choice” and “informed consent”? Are the concepts or doctrines of informed choicebased on those of informed consent? Is informed choice a pre–condition of informed
consent? I think that the concept of informed choice is less familiar to most people in Japan.
On the other hand, informed consent has become a familiar word in everyday life, here in
Japan and in other parts of the world, and means that a physician must inform a patient
about the risks, benefits, and alternatives involved in any medical procedure and mustobtain the patient’s written consent to proceed. However, not all medical treatments require
written informed consent. For example, in many countries ultrasound screening is usedroutinely and written consent is not considered necessary.
Ultrasound screening may detect fetus malformation, causing the woman emotional
distress and leading her to face difficult decisions about the pregnancy. The same can besaid for NIPT (non-invasive prenatal testing). If the NIPT result shows that the fetus has achromosome condition, it can have significant emotional implications and affect women’s
reproductive autonomy. For this reason, a consensus emerged about the necessity of written
informed consent that should be obtained from the patient before performing NIPT.
So, as Prof. Mills pointed out, there is not a coherent system of consent for non–invasive
screening. Should same level of consent (e.g. written consent) be adopted for all non–invasive prenatal screening?

47

Marcelo de Alcantara
Prenatal Testing from a Legal Perspective

Routinization
In the case of ultrasound, written consent is generally not required probably because it isperformed as a routine procedure to screen for potential pregnancy problems, even where
the woman is not at any particular risk.
And it is exactly this routinization one of the major concerns facing NIPT. It may becomea standard test that most women undergo simply because other women undergo. Many
people argue that NIPT should not be a part of routine pregnancy care because of thenegative impacts on informed decision making. Routinization could, according to them,potentially undermine the decision–making process.
Wrongful birth claim
Even though NIPT does not become part of routine pregnancy care, once the test is
introduced to clinical practice, it might be expected that doctors offer this to the patients.
Doctors must inform their patients about any known risks involved in a pregnancy, andfailing to do so may lead to a medical malpractice lawsuit.
In a wrongful birth lawsuit, parents sue a doctor or hospital and seek damages for a childborn with birth defects. The claim for damages is based on the cost to parents of raising an
unexpectedly disabled child.
Parents in a wrongful birth lawsuit often claim that because they didn’t have enoughinformation to make an informed decision on whether or not to carry a pregnancy to term,
their child was born with significant birth defects.
Restrictions on accessHowever, on the other hand, there is also debate over whether NIPT should be limited toserious medical conditions. Some countries currently restrict NIPT to women at increased–
risk, only offering NIPT to women of advanced maternal age or to pregnancies where thereis evidence from ultrasonography of fetal anomalies.
Japan
This is the case of Japan. As Prof. Tsuge mentioned, the Japan Society of Obstetrics andGynecology has drawn up guidelines that limit the use of NIPT to a number of cases. So
NIPT testing is available primarily to pregnant women of advanced maternal age and thosefound at risk of carrying babies with chromosomal abnormalities in earlier exams.
In addition, claims for wrongful birth are not generally accepted in Japan. The basic theoryof a wrongful birth claim is that the doctor failed to advise the parents of the defect so thatthey could decide whether or not to terminate the pregnancy. But in Japan a doctor has no
obligation to inform a patient about available testing that might reveal possible defects in a
fetus.

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Kyoto case (1997) 1)
In 1997, the Kyoto District Court decided a case involving a 39–year–old woman and herhusband’s complaint that their daughter was born with Down’s syndrome because the doctor
refused to conduct amniocentesis and, as a result, she was deprived of her right to decide
whether or not to give birth to the child.
The woman became pregnant and was 39 when she gave birth in June 1994 to a girl with
Down syndrome. The woman claimed she consulted her doctor, in February 1994, when she
was 20 weeks pregnant, and told him she wanted to perform an amniocentesis as she wasover age 35. However, the doctor refused to perform it, saying that the amniocentesis
results would be available only after the time limit for a legal abortion in Japan, which is 22
weeks of gestation. The woman claimed damages for psychological, emotional and financial
consequences of giving birth, including the costs of raising a child with Down syndrome.
The Japanese court ruled in favor of the doctor and accepted his argument that there wasno violation of the woman’s right to decide whether or not to give birth because even if theamniocentesis had confirmed Down syndrome, the pregnancy could not be legallyterminated.
The court also concluded that it was a physician’s discretionary authority whether he or
she recommends a test and that there is no right to know in advance about genetic disorders
in order to prepare for the arrival of a child with special needs. The court noted that receiving
the diagnosis in this case could be an emotional and traumatic event and could be an
incentive to seek out illegal abortion.
Case of R.R. v. Poland (2011) 2)This approach, adopted in Japan, was recently challenged before the European Court of
Human Rights.
In a case decided in 2011, the European Court of Human Rights held that Poland had
violated the prohibition against inhumane and degrading treatment for denying a woman
timely access to genetic testing. The woman had been denied access to an amniocentesis
and an abortion, and she eventually gave birth to a child with Turner syndrome.
The case concerned a pregnant mother carrying a child thought to be suffering from agenetic abnormality. She was deliberately refused genetic tests during her pregnancy by
doctors who were opposed to abortion, so she missed the time limit in Poland for a legal
abortion and gave birth in July 2003 to a baby suffering from Turner syndrome. She broughtsuit against Poland arguing she was subject to inhuman and degrading treatment and that
her rights to private and family life were violated.
The Court stated that the human rights resulting from article 3 (prohibition of inhuman ordegrading treatment) and article 8 (right to respect for private and family life) of theEuropean Convention on Human Rights were violated in denying her timely access to prenatal
tests to determine whether the fetus was suffered from congenital abnormalities 3).

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Marcelo de Alcantara
Prenatal Testing from a Legal Perspective

So, there are legal considerations surrounding the use of prenatal testing technologies,
including national laws on abortion and assisted reproductive technology (ART). States will
have to decide about regulating prenatal testing or not to ensure these technologies fit into
existing legal frameworks of each country, and courts may face very difficult questions
concerning reproductive autonomy and selective abortion.

Endnotes
1) Kyoto District Court, Judgment, 24 January 1997. Hanrei Jiho, n. 1628, p.71.
2) European Court of Human Rights, R.R. v. Poland, no. 27617/04, Judgment of 26
May 2011.
3) The Polish government was ordered to pay the woman €60,000.

Marcelo de Alcantara
Associate Professor at the Department of Social Sciences and Family Studies, Ochanomizu University.
His research interests lie at the intersection of family law, comparative law and private international law, witha special focus on assisted reproductive technology issues and cross-border family disputes.

His recent publications and articles are as follows:
Marcelo de Alcantara, 2013. National Reports: Japan, in International Surrogacy Arrangements: Legal
Regulation at the International Level, Katarina Trimmings and Paul Beaumont (eds), Hart Publishing, (inEnglish)Marcelo de Alcantara, 2013. Brazil’s Parental Responsibility Law, KOSEKI JIHŌ, n. 695, 2013, pp. 11–17(in Japanese)
Marcelo de Alcantara, 2011. International Surrogacy: Legal Parentage Without Borders?, LEX MEDICINAE –REVISTA PORTUGUESA DE DIREITO DA SAÚDE, 16, Coimbra, pp. 99–105 (in Portuguese)

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Q&A
Q1. About apparatus of choice
Speaker 1:
I have a question on the Apparatus of Choice. I think this is based on Foucault. Right?
Catherine:
Yes.
Speaker 1:
Yes, okay. Based on the interpretation of Foucault, in my understanding – maybe I am wrong,
because I need to digest your explanation – you’ve mentioned there is a sort of uncertainty
generated by technologies. So, there can be issues – something difficult for people tounderstand well. Think about brain death, for instance. Usually people couldn’t understandwhat’s going on when they face the situation, but a doctor gives some information and apatient’s family will just accept that because the issue is so difficult to follow and because often
they are under so much pressure.
Catherine:
Yes.
Speaker 1:
Their decisions should be free from that. So my point is… Do you agree if I say we are often
not like that, or make judgments, just as described in your explanation?
Catherine:
Yes. Look, I think that’s true. I think the question is how we kind of think about the status ofthese elements - whether they are normative principles which ought to be met, whether
they’re kind of criteria that ought to be met, or whether they are, when we look at the kind ofthings people are saying and doing, they’re the kinds of things that people talk about
regardless of whether practice actually meets these criteria or norms. So I’m interested in thesecond approach, I guess, which is to say, okay, these are the things people talk about –I mean knowledge, for instance, or being sufficiently informed. There's a lot of talks about
being sufficiently informed across various medical contexts, I guess. But whether someone issufficiently informed or not or what even counts as being sufficiently informed is really notoften clear, but the discourse of what people say is still about being sufficiently informed. So
what I'm trying to get at is not whether there's a – not whether they’re kind of satisfying as
criteria but whether they are present as discursive elements, I guess.
Speaker 1:
Yes. I got it. Thank you.

51

Q&A

Catherine:
Yes, yes. And I think just secondly, it probably varies in relation to different contexts as well.
Speaker 1:
Exactly.
Catherine:
So I’d be very interested to hear more about – or to see more about how this operates inrelation to brain death.
Speaker 1:
Actually, the thing is how doctors are involved in making decisions in brain death cases….
Catherine:
Yes, yes. That’s right. Yes. So in that context you might see that clinicians are actually much
more involved or someone’s much more involved in leading people through that decision
making process because it’s just so shocking and difficult, yes－though I've also heard people
say or some colleagues of mine comment on how it’s often…, especially with younger
clinicians, it’s all just about, well, your choice, which the older doctors find difficult because forthem the practice would be to be more involved. So, there's a generational difference as well, I
think.

Q2. Ultrasound test in Australia
Speaker2:
In Australia, how many times do pregnant women take ultrasound during their pregnancy?
Catherine Mills:
Twice. Sometimes if a woman has a private obstetrician they might do a test in their office orthey might look at the baby every time, she goes. But that’s not a test. There are someobstetricians in Australia trained on ultrasound. But most obstetricians aren't, so one of thecomplaints is that when women have their ultrasound scan in their obstetrician’s office, that’s
not telling them whether there's anything wrong. In fact the obstetrician may not have any
training in using an ultrasound. So it reassures women but it’s a false sense of reassurance.
The untrained obstetricians couldn’t tell them whether there's anything wrong. Ultrasound isassumed to be diagnostic, so the obstetricians trained on ultrasound worry about its use byuntrained doctors. And so there's a debate in the college about how to handle obstetricians nottrained in ultrasound.

Q3. How many Australian women undergo ultrasound?
speaker3:
What percentage of Australian women undergo ultrasound?

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Catherine Mills:
My sense is that almost all women will have the 18-week scan, almost all pregnant women
who are planning to carry to term will have the 18-week scan. And most women will have a
12-week scan as well. It's recommended to all women that they have the 12-week scan at the
obstetrician, but it’s especially strongly recommended for women over 35. Some womendecide not to because even if their baby has Down syndrome they will carry to term. But
what's interesting is that the first scan has come to be seen as a test about Down syndrome,even though they test for other things early.
Speaker3:
You mean that the first ultrasound scan is to find Nuchal Translucency?
Catherine Mills:
Yes. That's right.
Speaker3:
And combined with the maternal serum?
Catherine Mills:
Yes. Combined with blood test and maternal age.

Q4. About not taking a prenatal test
Speaker4:
Maybe I missed some points. Do you think that the main issue of pregnant women in Australia
is not taking the prenatal test?
Catherine Mills:
Yes. I should say that. But to my mind, this is a problem because – I mean this is partly
contextual, Melbourne is a very multicultural city. There are lots of recent immigrant women
who just don’t speak very good English, and they don’t read English. They have no way of
being informed because no one is providing them with the information in a way that they could
understand.
So to my mind, it’s not that they are irresponsible but they come to be seen as irresponsible
within this process of making them make choices. I think there is a lot of emphasis on themmaking choices and who’s making – I want to say the right choice — because on the one hand
women are afraid to make whatever choice they like. But in fact some choices get more
supported than others, I think. I think the legal questions are difficult. Professor Marcelo, youmade the point that these technologies need to fit within the legal frameworks, the existing
legal frameworks and I think that is so correct. What we see is an enormous amount of tension
between the technologies and the law, as these cases reveal.
And one worry or one of the things that is probably going to happen in Victoria, where I live,

53

Q&A

is that we will see more terminations on the basis of fetal sex, because we have abortion on
demand, you can have an abortion up to 24 weeks without having to give any reason. There's
not even an indication of why you're having a termination. And with NIPT, you can find out the
fetal sex at 12 weeks. So you’ve got a long window then to decide. And a lot of doctors and a
lot of other people are worried that this will lead to more sex selective termination because
Victoria has quite liberal abortion laws now and that’s one of the concern with NIPT.
Speaker5:
After the 24 weeks, perhaps a client cannot abort the fetus.
Catherine Mills:
Well, after 24 weeks I mean you would’ve had an 18-week scan in any case by that stage. So
at 18 weeks, you could find out the fetal sex at that point. So even they need to – if you
wanted to make sure you had a girl or a boy, you could still terminate following that. It’sdifficult, I mean it’s a sort of risk factor at 18 when then you would have to make a decision
about whether you’d have NIPT or amniocentesis. Yes. But mostly you would be thinking about
amniocentesis because you should’ve – if it was Down syndrome or something that you could
be tested for with NIPT that would have shown up at 12 weeks. But it’s complicated. I mean
this is why – this is a complicated question and no one really knows how NIPT fits in becauseof these various questions. So as you mentioned, it’s being recommended as a test for womenin high-risk categories like advanced maternal age, where they get a much clearer indicationthat leads to the – obviously, the Down syndrome and a much smaller false positive. That is
the main benefit.
You’d look – it’s interesting it’s difficult to actually know what's happening here because on
the one hand Australia doesn’t collect very accurate statistics about abortion because it’sbased by state and because when it's coded as a gynecological procedure under Medicare, butthere can be a whole range of procedures. So it’s really hard to know how many women are
actually having terminations. The sense is that more women have terminations on the basis of
Down syndrome diagnosis than may have been the case, but at the same time one person
involved in disability advocacy told me that the rate of live births for Down syndrome hasn’tchanged. So that’s because younger women are having children with Down syndrome because
they’re not having the nuchal translucency test because it’s not necessary – it’s not strongly
recommended to them.

Q5. Disable child isn’t unhappy?
Speaker2:
I've lived in United. I often saw many Down Syndrome people in places like super markets andpublic places. I think that more than a little prenatal women don’t choose termination if theywould find that a fetus has a risk of Down syndrome.

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IGS Project Series 1
Choice and Consent in Prenatal Testing

Catherine Mills:
Yes.
Speaker3:
In the United States, Down syndrome is still unwilling so much because it’s a recognized as
disability or malformation. When I talked with women in the United States, they said to me
that we met many Down syndrome people in Tokyo. So the – I am not sure about it. I cannot
agree with it.
Catherine Mills:
Nancy Chris actually has a very interesting article where she and another colleague did a studyof attitudes towards disability. And the point that she makes is that while people might havegenerally positive attitudes towards something like Down syndrome in particular, they still
don’t want their child to have it. So even though they might have kind of warm and fuzzy
feelings about Down syndrome and think that it's fine, they don’t want their child to have
Down syndrome. Though interestingly one state, I think it's Ohio in the USA, it’s now trying toban abortions on the basis of Down syndrome. Why?
Speaker2:
Ohio?
Catherine Mills:
Ohio I think, yes.
Catherine Mills:
Though it’s quite expensive raising a child with a Down – with a disability or it can be quite
expensive and there's not very much social support in the US. Any differences between thedesire for the normal child and the unhappy child. That’s interesting, I mean, let’s say it’s aninteresting idea that a disabled child is an unhappy child to begin with. I think that, to me, oneof the points that’s interesting is the idea that because prenatal testing can tell you whether
your child will be normal in some sense, a genetic sense or chromosomal sense, it is also
telling you that your child will be happy and will have a good life, which of course it isn’t.
Okay? Because, for one thing – and prenatal testing can’t do this. It can’t tell you whether
your child is going to have autism for instance, which many people will say it’s much worse,
would be much harder to raise a child with autism than raise a child with Down syndrome. It
can’t tell you that your child will fall over in a playground and acquire a disability that way. It
just can’t tell you all of these things about the well-being of your child. But I think it has
become understood to actually – to make this connection between normal and happy, and I
think that’s what happens when people think about prenatal testing is that they think in thoseterms. Genetically normal means good life and it just doesn’t yeah, that’s what I think, yes.

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IGS Seminar Report on IGS website

IGS Seminar Report on IGS website

Choice and Consent in Prenatal Testing

The IGS Seminar “Choice and Consent in Prenatal Testing” was held on November 18, 2015 at
Ochanomizu University. The main theme of the seminar was “Are decisions about prenatal testing by
pregnant women truly their choice?” Pregnant women face decisions such as whether to undergo
prenatal testing or whether to abort a fetus when tests results suggest disability. Dr. Catherine Mills(Monash University) and Dr. Azumi Tsuge (Meiji Gakuin University) gave presentations on issues related
to prenatal testing based on their respective research in Australia and Japan. Responding to theirpresentations, Dr. Marcelo de Alcantara (Ochanomizu University) gave comments from his perspective
as a legal researcher.
From the viewpoint of bioethics and feminism, Mills referred to the self-determination of pregnant
women with regard to prenatal testing. Mills provided examples of ultrasonography practice in Australia
and then explained the concepts of “normalizing” and “apparatus of choice.” Because people are greatly
affected by their culture and social environment when making choices, prenatal testing may be
associated with discrimination and bias against disability. Pregnant women often undergo
ultrasonography without recognizing it as prenatal testing because it isn’t invasive. Since it was
introduced, Non-invasive Prenatal Testing (NIPT) has been widely adopted in Australia because it isrequires only a blood sample from the pregnant woman and therefore places no burden on her or her
fetus. Informed consent and counseling are required before NIPT, but such procedures are not requiredin the case of ultrasonography. Citing a book written by Foucault, Mills referred to the nature of biopolitics and disciplinary power since the 18th century. The basic concept of biopower is the socializationof reproductive power and reproductive activity in association with the pathologization of certain
conditions for the maintenance and promotion of health and well-being of individuals and the society as
a whole. Mills suggests that ultrasonography is a medical technology that promotes standardization andis an apparatus of choice that make pregnant women to choose to abort when a possible disability isdetected. In other words, prenatal testing should work to enhance pregnant women’s autonomy basedon their moral or ethical principles. However, in practice, testing without informed consent andcounseling may lead to the elimination of disabled children because women’s decisions may be
influenced by the widespread negative image of disability.
After Mills’ presentation, Tsuge introduced the current situation in Japan. Apart fromultrasonography, the number of practiced prenatal tests (such as amniocentesis) in Japan is significantly
smaller than in other developed countries. According to Sato, a leading researcher of prenatal testing inJapan, the number of maternal serum marker tests performed in the U.S. is 167 times larger than inJapan and the number of amniocentesis tests performed in Germany is 10 times larger. A survey in 1999
reported that only 3% of all pregnant women received prenatal testing based on maternal serum markers
in Japan. The Health and Welfare Ministry and gynecologists made a statement in 1999 that pregnant

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women did not necessarily need to be informed about maternal serum marker screening; their reasoning
was that the test might result in an increase in abortions of fetuses with disabilities. NIPT was introduced
in 2013 in Japan, but it is only available for pregnant women of age of 35 or older. Before NIPT was
introduced, there was a controversy about whether it would result in increased “casual” abortions basedon eugenic thinking, particularly for pregnant women in higher age groups. Of nearly 200,000 cases ofabortion performed annually in Japan, probably only 1% to 2% can be ascribed to the results of prenatal
testing. Only 0.6% of the 7700 NIPTs conducted since the test’s introduction in 2013 have given positive
results. Based on these data, Tsuge raised doubts about the idea that testing would increase abortion.
She also explained the history of prenatal testing in Japan. Although abortion has been prohibited by
the Criminal Law, prenatal testing has been promoted in connection with eugenics and in association
with the Eugenic Protection Act and the Maternal Protection Act.
Following the reports by the two speakers, Alcantara gave comments from a legal perspective.
Referring to two past cases in involving prenatal testing, he pointed out the possibility that physiciansmight suggest prenatal testing in order to preclude Wrongful Life lawsuits (filings for unwanted babies)
in the future. The first case was brought in 1997 by a woman aged 39 and her husband in Kyoto whogave birth to a baby with Down syndrome. Even though the woman told the doctor of her desire toreceive an amniotic fluid check in the 20th week of pregnancy due to anxiety about her age, the doctor
refused to provide the test, saying that it was meaningless because the result would be obtained only inthe 22nd week of pregnancy, when the option of abortion was no longer available. The doctor’s claims
were accepted by the court, and the couple lost the case. In another lawsuit case heard by the European
Court of Human Rights in 2011, a Polish woman who gave birth to a baby with Turner's syndrome
insisted that her individual and family rights to subsistence were impaired by giving birth to a disabledbaby, which resulted from her doctor’s negligence in providing her with information regarding prenatal
testing during the period when abortion was available. This case was initially taken initially to court in
Poland and later went to the European Court of Human Rights, which upheld the woman’s claims,
resulting in her victory. As there cases reveal, choices and decisions by women have been controlledsocially by being linked with ideologies such as eugenics, even if childbirth and raising are personalmatters.

IGS Project Research Fellow
Yukari Semba, Ph.D

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IGS Seminar Report on IGS website

Seminar Report on IGS website

第３回 IGS セミナー：キャサリン・ミルズ先生を迎えて
Choice and Consent in Prenatal Testing（出生前検査における選択と同意）2015 年 11 月 18 日（水）にお茶の水女子大学にて、ジェンダー研究所主催の IGS セミナー
「Choice and Consent in Prenatal Testing（出生前検査における選択と同意）」が開催された。本セ
ミナーはすべて英語で行われ、その主要なテーマは、妊娠している女性が出生前検査を受検するか否かの選択や、検査で胎児に障がいのある可能性が提示された場合、女性たちの産む・産まない選択は本当に自律的決定であるかという問題であった。セミナーではモナシュ大学のキャ
サリン・ミルズ氏と明治学院大学の柘植あづみ氏が、それぞれオーストラリアと日本の出生前検査の現状を踏まえ、検査に関する問題を提起し、その後、お茶の水女子大学のマルセロ・デ・ア
ウカンタラ氏が 2 人の報告を踏まえて法学研究者の立場からコメントした。参加者は 9 名であったが、深いディスカッションができた。
第一スピーカーのキャサリン・ミルズ氏は、バイオエシックスやフェミニズムの視点から妊婦の出生前検査に関する女性たちの自己決定に言及した。オーストラリアの特に超音波検査実施の現状を例にあげ、標準化（Normalizing）、選択装置（Apparatus of Choice）をキーワードに話をすすめた。人が何かを選択するとき、文化や社会環境に大きく影響を受けるが、出生前検査に関しては、障がいに対する差別や偏見と結びついている。超音波検査は妊婦や胎児にとって非侵襲的であるため、これが出生前検査であることを自覚しないまま妊婦たちが受検している点も問題として提示した。最近、オーストラリアでも NIPT（Non-invasive Prenatal Testing―新型出生前検査）が導入され、これも妊婦の血液の採取だけで検査が可能で非侵襲的なために、検査が普及しつつある。しかし少なくとも、NIPT では実施前にインフォームドコンセントやカウンセリングがあるが、超音波検査にはこれらがない。ミルズ氏はフーコーの著作をあげ、18 世紀以降のバイオ
ポリティクスの本質や、とくに規律権力（disciplinary power）に言及した。生権力の基本的な考え方は、個人や全体の健康やウェルビーイングを維持・促進することに関心をむけた生殖の権力（reproductive power）や生殖行動の社会化であり、ある状態を病理化することと関連する。ミルズ
氏は超音波検査が標準化のための医療技術であり、妊婦に一定の選択をさせる装（apparatus
of choice）となっている。つまり道徳的原則や倫理原則を掲げて、妊婦の自律を尊重して検査も中絶も妊婦の選択だという姿勢を示しているが、、妊婦は現実には、障がいに対するイメージから、障がいの可能性があれば中絶を選択することが多く、超音波検査が障がい児排除の方向へとむかわせているというのだ。

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http://www.igs.ocha.ac.jp/igs/IGS_Tushin/#d11 参照

この議論を受けて、次に明治学院大学の柘植あづみ氏が日本の状況について説明した。日本では超音波検査以外の出生前検査（羊水穿刺等）の実施件数は他の先進国に比較すると非常に低い。日本の出生前検査の第一人者、佐藤のデータによればアメリカでは母体血清マーカ
ー検査は日本の 167 倍、ドイツでも羊水穿刺が日本の 10 倍も実施されている。1999 年の調査では、日本の妊婦全体の 3 パーセントしか母体血清マーカーによる出生前検査を受けていないと報告されたが、旧厚生省と産婦人科医は 1999 年、妊婦に積極的に母体血清マーカーという出生前検査のことを知らせなくてもいいという声明をだした。これは国や産科医たちが障がいのある
胎児の中絶が増加することを懸念したからである。日本では NIPT が 2013 年から導入されたが、35 歳以上の妊婦しかこれを利用できない。導入前には、妊産婦の年齢が高くなっている日本で、この検査は優生思想による安易な中絶に結びつくとその賛否が議論された。日本では現在年間約 20 万件弱の中絶が実施されているが、出生前検査の結果の中絶はわずかにすぎない。おそらく全体の１～2％ほどだと推測される。2013 年に NIPT が導入されてから、検査の実施件数は7700 件であり、そのうちの 0.6％しか NIPT で陽性反応がでていない。にもかかわらず、この検査
で中絶があたかも増えるという考え方がでてくることに対し、柘植は疑問を呈した。その後、柘植
氏は日本の出生前検査が優生思想と深く結びつき、堕胎の罪で中絶が刑法で禁止されているのに、優生保護法や母体保護法と関連を持って、すすめられてきた経緯を紹介した。
これら二人の報告を受けて、マルセロ・デ・アウカンタラ氏が法の専門家としてコメントをした。
アウカンタラ氏は出生前検査に関連する過去にあった 2 つの事例をあげて、いずれ医師がWrongful Life 訴訟（生まれないほうがよかったと提訴）を避けるために、出生前検査を提示するようになる可能性があるという。最初の事例は 1997 年に京都で 39 歳でダウン症の子どもを出生した女性とその夫が起こした裁判である。女性は年齢的な不安から妊娠 20 週目に医師に羊水検査を希望する旨を伝えたが、医師は中絶ができなくなる妊娠 22 週目以降にしか結果がでないため、羊水検査は無意味だと検査の提供を拒否した。裁判では、この医師の主張が認められ、女性と夫は敗訴した。もう一例は 2011 年に欧州人権裁判所でおこった裁判で、ターナー症候群の子どもを出産したポーランド人の女性が、医師が中絶可能な期間に検査について情報提供を怠ったために、障がいのある子どもを産んで個人と家族の生活権が侵されたと訴えた。女性はポー
ランドの裁判所にも訴え、最終的に欧州人権裁判所に持ち込まれ、この裁判では女性が勝訴したという事例をあげた。 出産・育児は個人的なことだが、それが優生思想等と結びつき、女性の選択や決定が操作されている点が明らかになった。
（記録担当：仙波由加里 IGS 特任リサーチフェロー）593/2/2016

IGS Project Series 1
Choice and Consent in Prenatal Testing

3/2/2016

Power Point Slide: Catherine Mills

Choice and consent in prenatal testing in
Choice and consent in prenatal testing inAustralia
Australia

26 November 2015
26 November 2015
Assoc. Prof. Catherine Mills
ARC Future Fellow
Centre for Human Bioethics
Assoc. Prof. Catherine Mills
ARC Future Fellow
Centre for Human Bioethics

1
monash.edu

1monash.edu

Prenatal testing, freedom and biopolitics
Prenatal testing, freedom and biopolitics

 Prenatal testing is inseparable from biopolitical decisions about who comes

into the world and who does not.

 Prenatal testing is inseparable from biopolitical decisions about who comes Thoseoften
seen
into thedecisions
world andare
who
does
not.as based on individual freedom/autonomy,

where freedom is understood in terms of individual or parental choice, and Thosedecisions
are isoften
seen asbased interference
on individualin/coercion
freedom/autonomy,
the mainimperative
to reduce
externalof thatwhere
choice.freedom is understood in terms of individual or parental choice, andthe main imperative is to reduce external interference in/coercion of that Myquestion is: what does the emphasis on individual choice do? What
choice.
effects does the structuring of prenatal testing around individual choice have?
My question is: what does the emphasis on individual choice do? Whateffects does the structuring of prenatal testing around individual choice Ihave?
propose the notion of an “apparatus of choice” to argue that this emphasis:– reveals
complexofnexus
of affect, ethics
and normalization
at thisworkemphasis:in I propose
thea notion
an “apparatus
of choice”
to argue that
reproductive biopolitics;– reveals a complex nexus of affect, ethics and normalization at work in– often works to reinforce existing inequalities and patterns of discrimination.
reproductive biopolitics;– often works to reinforce existing inequalities and patterns of discrimination. 2
2

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Slide: Catherine Mills
Choice and Consent in Prenatal Testing in Australia

Prenatal testing in Australia
Prenatal testing in Australia■Screening tests available: ultrasound, (in conjunction with maternal blood test for■trisomy
Screening
tests available:
ultrasound,(in conjunction
maternal
test forconditions);
recently,
cell-free fetal
DNA testingwith(oftencalled blood
NIPT, NIPS);
trisomyconditions);
recently,
cell-freefetal
DNAtesting(oftencalled
NIPT,NIPS);
microarray testing; diagnostic tests such as amniocentesis and CVS.
microarray testing; diagnostic tests such as amniocentesis and CVS.
■Well-established regime for ultrasound screening: 12wk and 18wk scans, available in■bothWell-establishedregimefor ultrasoundand 18wk
scans, available
inpublic hospitals(for somepatients)screening:and private12wk
ultrasoundor radiography
clinics.
both public hospitals (for some patients) and private ultrasound or radiography clinics.
■Public subsidies through Medicare for ultrasound tests, for all 18wk scans and many■but
Publicthrough
Medicareultrasoundtests, for all 18wk scans and many
not subsidies
all 12wk scans.
Notfor otherfor
screening
tests.
but not all 12wk scans. Not for other screening tests.
■National guidelines for ultrasound testing are provided by Australian Society of■UltrasoundNational guidelines
ultrasoundare provided
by Australianof
Medicinefor(ASUM),and testing
Royal College
of Obstetricians
andSociety
Gynecologists
Ultrasound Medicine (ASUM), and Royal College of Obstetricians and Gynecologists■These are guidelines only
■These are guidelines only
■What clinics test for, what markers they use, can vary (eg. Nasal bone in DS testing)■What clinics test for, what markers they use, can vary (eg. Nasal bone in DS testing)■Ongoing accreditation requirements to ensure quality of service■Ongoing accreditation requirements to ensure quality of service■ASUM has issued document on normal range fetal measurements that is widely■used.
ASUM has issued document on normal range fetal measurements that is widely
used.
3
3

Choice and consent
Choice and consent
 How does the introduction of cell-free DNA
 How
does
the introductionof cell-freeDNAtesting(knownas NIPT) relate
to and affecttesting(knownas NIPT) relate to and affectultrasoundtesting?
ultrasound testing?
 Changing rationale for/practice of 1st trimester scanChanging rationale for/practice of 1st trimesterscan Also reveals contradictions in approach to choice Alsoreveals incontradictions
approachto choiceand consent
non-invasiveinprenatal
testing
andconsentin
non-invasive
prenataltesting
regimes.
regimes.
 Ultrasound requires informed choice; NIPT Ultrasoundrequiresinformed choice; NIPT
requires informed
consent.
requires informed consent.
 Would an explicit consent procedure for Would
an explicit
consent
for of theultrasounddiminishsome procedureof the effects
ultrasounddiminish
some
of
the
effectsof theapparatus of choice, or is it just a different
apparatusofchoice,
or
is
it
just
a
different
manifestation of the same phenomenon?
manifestation of the same phenomenon?
4
4

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IGS Project Series 1
Choice and Consent in Prenatal Testing

The study
The study■ARC DP with Niamh Stephenson(UNSW) and■ARC DP with Niamh Stephenson(UNSW) and– Research assistance: Kim MacLeod (UTas) and Helen Ngo (Monash)– Research assistance: Kim MacLeod (UTas) and Helen Ngo (Monash)■Qualitative study of obstetric ultrasound (OU) in Australia■Qualitative study of obstetric ultrasound (OU) in Australia■Interviewees recruited from both private clinics and public hospital settings■Interviewees recruited from both private clinics and public hospital settings■Semi-structured interviews as well as (9) observations of ultrasound scans■Semi-structured interviews as well as (9) observations of ultrasound scans– 26 women interviewed, following either 12 week nuchal translucency scan or 20– week26 womeninterviewed,scanfollowing either 12 week nuchal translucency scan or 20
fetal morphology
week fetal morphology scan
– 27 professionals, including sonographers, obstetricians, genetic counsellors, disability– advocates
27 professionals, including sonographers, obstetricians, genetic counsellors, disability
advocates■How ultrasound impacts on ideas of moral status of fetus, and decisions about■selective
How ultrasound
impacts
termination(ST)on ideas of moral status of fetus, and decisions about
selective termination (ST)■Didn’t set out to focus on choice, but quickly became evident that this was a major■tropeDidn’tinset
out toallfocus
on choice,butexperience
quickly became
evident that
this wasalmostreflections
on theof undergoingor using
OU a major
trope in almost all reflections on the experience of undergoing or using OU
55

Biopolitics and reproduction
Biopolitics and reproduction
 First, establish the biopolitical nature of the context of prenatal testing: First, establish the biopolitical nature of the context of prenatal testing: Foucault on biopower: “the ancient right to take life or let live was replaced by a
 power
Foucault
on biopower:“the ancientright
to takelife or (HSlet live
was .replaced by ato foster
life or disallow
it to thepointof death”
1, 136)

power to foster life or disallow it to the point of death” (HS 1, 136) .
2 poles ‐ discipline and biopolitics
2 poles ‐ discipline and biopolitics
tied together in deployment of sexuality
tied together in deployment of sexuality

 “Sex was a means of access both to the life of the body“Sex wasa means
accessboth(1990,
to the146)
life of theand thelife ofofthe
species”

body and the life of the species” (1990, 146)

 “Socialization of procreative behavior” was one of the “four“Socializationof procreativewas
one of thegreat strategic
unities” behavior”
that formedthe“four great strategic
unities”
thatonformedthemechanismsof a power
focusedsex (103‐4)
mechanisms of a power focused on sex (103‐4)
 Political socialization through responsibilization
 Political socialization through responsibilization
 Medical socialization through pathologization
 Medical socialization through pathologization

6
6

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Slide: Catherine Mills
Choice and Consent in Prenatal Testing in Australia

Transforming reproduction
Transforming reproduction
 Technologization
 Technologization
 Commercialization
 Commercialization
 Normalization
 Normalization
 Ultrasound as pre‐eminent normalizing technology
 Ultrasound as pre‐eminent normalizing technology

 necessarily operates within a context of the medical management of risk and uncertainty
necessarily operates
withina context
the medical
managementof risk andon the one
hand,
and the ofpolitical
managementof population
uncertainty
on
the
one
hand,
and
the
political
managementof
population
wellbeing on the otherwellbeing on the other However, norms that underpin ultrasound practice do not in themselves require However,normsofthat
ultrasoundpractice
do notthemselves
the eradication
theunderpin
abnormal.
Rather, theeradication
ofintheabnormalrequirepointsthetheir
eradication
theoperation
abnormal.
Rather,the and
eradication
the abnormal
pointslocationofandwithinmoral
affectiveofeconomiesof thetoto their location and operation within moral and affective economies of thenormalnormal The “desire for the normal” (Kittay) is channelled through choice, revealing nexus of affect,
The “desirethenormalisation
normal” (Kittay) is channelled through choice, revealing nexus of
ethicsfor
andaffect, ethics and normalisation
7
7

PNT and Choice
PNT and Choice■This is consistent with bioethical/biomedical emphasis on the standard of informed■choiceThis isasconsistentbioethical/biomedicalemphasis on the standard of informed
requiredwith
to undertake
prenatal screening
choice as required to undertake prenatal screening■Yet clinicians (obstetricians, sonographers, genetic counsellors) expressed the■concern
Yet clinicians(obstetricians,
sonographers,
genetic
counsellors)
expressed
the test,
that women
were insufficiently
informedabout
having theultrasoundconcern
that
women
were
insufficiently
informedabout
havingtheultrasoundtest,
its purpose etc
its purpose etc■Worried that women did not appreciate that ultrasound screening is a medical■examination;
Worried thatthat
women
did
not appreciatethat ultrasoundscreeninga medical
is haspotential
consequences;that it may
requireisthem
to makeexamination;that is has potential consequences; that it may require them to makedifficultdecisionsdifficult decisions■At the same time, they also strongly valued non‐directiveness when an anomaly is■found,At thesosamethey alsotostrongly
valuednon‐directivenesswhen an of
anomalyisthattime,
the decision
terminate
is understoodas an expression
woman’sfound,
sothat
thedecisiontoterminateisunderstoodasanexpressionofwoman’sautonomyautonomy■In particular, there was a strong emphasis that it was a woman’s decision whether
■or
Innot
particular,
there awas
a strongfollowing
emphasisindications
that it was ofa woman’sdecisionwhether
to terminate
pregnancy
fetal anomaly(though
with
or
not
to
terminateapregnancy
following
indicationsoffetal
anomaly(thoughwiththe caveat that not all requests for termination are necessarily supported)the caveat that not all requests for termination are necessarily supported)
8
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IGS Project Series 1
Choice and Consent in Prenatal Testing

The apparatus of choice
The apparatus of choice■How might this emphasis on choice be understood and its effects analysed?
■How might this emphasis on choice be understood and its effects analysed?
■There is a strong concern in feminist bioethical literature that choices made are
■not
There
is a strong
concernfeminist
bioethicalliterature thatinformed),
choices madeareit isgenuinechoices– (eg, inbecausewomen
are insufficientlyor that
not genuine– (eg, because
women
are insufficiently
informed),or that it ismere
fantasychoicesthat genuine
choices canbe madein this context(Kittay, Paul)
mere fantasy that genuine choices can be made in this context (Kittay, Paul)■This is not my approach; rather, I ask, what does the emphasis on choice do? Can■weThis
is not my approach;ask, whatof
does
the emphasis on choice do? Can
understandthe effectsrather,of the Ioperation
choice?
we understand the effects of the operation of choice?
■ Propose the notion of an ‘apparatus of choice’?
■ Propose the notion of an ‘apparatus of choice’?
■What is an ‘apparatus’?
■What is an ‘apparatus’?
– Relatively cohesive and coherent conglomerate of material and discursive– elements
Relatively thatcohesive
conglomerateof material
and discursive
shapeandbutcoherent
do not determine
behaviourin a given
context
elements that shape but do not determine behaviour in a given context– Operates differently in different contexts, but some consistent characteristics– Operates differently in different contexts, but some consistent characteristics
99

Elements of the apparatus of choice
Elements of the apparatus of choice■Foucault highlights the three axes of subjectivity, knowledge and■normativity
Foucault highlights
thetracing
three axesof subjectivity,
knowledge
as ways ofan ‘apparatus’and its
effects andnormativity as ways of tracing an ‘apparatus’ and its effects■In the apparatus of choice:■In the apparatus of choice:– Subjectivity: presupposes subject capable not only of making choices,– but
Subjectivity:
subject capableof makingpresupposes
rationally justifiablechoices not only of making choices,
but of making rationally justifiable choices– Knowledge: emphasis on being ‘informed’, where this primarily means– Knowledge:emphasisonof
being‘informed’,
this primarily
means
in terms of medicalview
an anomoly;
butwherealso stateof knowledge
re
in
terms
of
medicalviewofananomoly;
but
also
state
of
knowledgereanomolies etc; uncertainty generated by technology itself
anomolies etc; uncertainty generated by technology itself– Normativity: choices are understood as needing to be ‘free’, ie,understoodbe ‘free’,autonomyie,– Normativity:
unimpeded bychoices
others.are
Liberalnotionsasof needing
negativeto
freedom,
unimpededby others.
Liberal individualistic
notions of negative
as independence
etc. Stongly
focus.freedom, autonomy
as independence etc. Stongly individualistic focus.
10
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Slide: Catherine Mills
Choice and Consent in Prenatal Testing in Australia

Clinicians as service providers
Clinicians as service providers■ Allows clinicians to adopt position of moral neutrality, and also forces them to, even
■if Allows
clinicians
toprovide
adopt positionof moralcare.
neutrality, and also forces them to, even
they would
like tomore engaged
if they would like to provide more engaged care.
■ Emphasis on non‐directive information provision, both prior to and after PNT.
■ Emphasis on non‐directive information provision, both prior to and after PNT.
■ However, prior to ultrasound, the standard of informed choice and implied consent■rather
However,
to ultrasound,the standardof informed
choice andfor
impliedconsent
thanprior
express
consent meansthat no‐one
takes responsibility
providingratherthan
express
consentmeans
thatno‐onetakes
responsibility
forprovidinginformation or ensuring that women are sufficiently informed.
information or ensuring that women are sufficiently informed.
“This is simply about“This
is simply
about thatprovidinginformation
providinginformation
allows women to makethat
theirallowswomen–tomake theirown choices”
Ben,
own
choices” – Ben,
Obstetrician
Obstetrician“People have individual choice and might not make the same
“Peopleindividual
choiceif and
not make thatthe samedecisionshave
as me.
And I think,theymight
can rationaliseand,decisions
as
me.
And
I
think,
iftheycanrationalise
that
and,
you know, it, they put together a sensible argument, then
I’m
you
know,
it,
they
put
togetherasensibleargument,
thenhere to, to help them through the difficult time. But, yeah,I’m
I
here to,to help
them
the difficult
But,yeah, I
mean
there
would
be throughcircumstanceswheretime.
I knowthemean there
wouldcircumstanceswhere I know
the
would
say,be“No,
that’s not reasonable.””‐ Ben,
hospital
would
say,
“No,
that’snotreasonable.””‐Ben,
hospital
Obstetrician
Obstetrician
1111Clinicians as service providers
Clinicians as service providers■ After testing, (non‐directive and neutral) roles as clinical agents can be
■more
After
(non‐directive
and neutral)rolesresponsibility
as clinical agents
candecisionbeortesting,less strictly
held, but eitherway, moral
for any
moreor lessonto
strictly
held, but either way, moral responsibility for any decision
is projected
women.
is projected onto women.
■Clinicians are reluctant or unable to publicly reflect on the moral ambiguity■ofCliniciansare(even
reluctantorwantunabletheir roles
if they
to).to publicly reflect on the moral ambiguityof their roles (even if they want to).
■The apparatus of choice allows clinicians to avoid the moral ambiguity of■their
The apparatus
choiceallowsclinicians tosolely
avoid onto
the moral
ambiguity ofpractices ofandproject
responsibility
women.
their practices and project responsibility solely onto women.
■Some clinicians are very reflective about this.
■Some clinicians are very reflective about this.
“Have we become more sophisticated in our“Have
we becomemoreAresophisticatedin ourcounselling?
No doubt.
women morecounselling?
doubt. Are
womenaware of theirNochoices?
Yeah,
almostmore
certainly.
awareof theirchoices?
Yeah,almostcertainly.
You know,
are most
better,women
better
off?
You
know,
are Kenmost– better,
women better off?
I’m not
sure.”
Sonographer
I’m not sure.” Ken – Sonographer“So I don’t think we do give women lots of“So
I don’tthinkdothemgive womenchoice.
I think
wewe
give
lots of lots ofchoice.
I think
wewe
give
them lotsbamboozle
ofinformationandsometimes
information
andwe
wesay,
sometimes
bamboozle
them, and then“It’s all yourchoice.”them,inand
thenwe’rewe say,all your choice.”And,
a way,
kind“It’sof handing
over
And,
in a way,responsibility.“
we’re kind of –handing
over
professional
Deanna,professional
responsibility.“ – Deanna,
genetic
counsellor
genetic counsellor

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IGS Project Series 1
Choice and Consent in Prenatal Testing

Women as moral actors
Women as moral actors■ In the apparatus of choice, women are cast as■responsible
In the apparatus
of choice,
women
are cast as
moral agents
capableof informed
decision‐

responsible
agentscapableof informed
decision‐makingand moral
who bearprimary
culpability
for theirmaking and who bear primary culpability for theiractions
actionsOR
OR■ Fundamentally ir‐responsible, incapable of informed■decision‐making
Fundamentally but
ir‐responsible,
incapable
informed
neverthelessculpableoffor
thisdecision‐making
butneverthelessculpableforthis(perceived) moral failure(perceived)
moral
failure For example, women who are insufficiently informed

 For
example,womenofwho
are insufficiently
informedabout
or respectful
the medical
aspects of
aboutorrespectfulofthemedicalaspectsofultrasound (as opposed to the social) are seen as
ultrasound (asand
opposedtoculpable
the social)asirresponsible
morally
forarethisseen
failure.
irresponsible
andmorally
culpablefor
thisfailure.
 Women who do not read English, or who do not have easyWomen
who donot readdo not haveinternet
access,also English,
fall into or
thiswhocategory.
easy internet access, also fall into this category.
“I always get the sense that I’m kind of on my own to“I always
thethesense
I’m kindof on12mywks
own tomakethe getfinal,
finalthatchoice”– Maria,makethe final,
the final
choice” – Maria, 12 wks
pregnant,
consideringamniocentesis
13
pregnant, considering amniocentesis
13

Women as moral agents: further aspects
Women as moral agents: further aspects■Control of information: lack of consent process means women are made■responsible
Control of information:of consent
processmeansorwomenare madefor their ownlack
conditionof being
informed
uninformed
responsible for their own condition of being informed or uninformed■Control of her body: ideal woman having ultrasound is thin, but not too■thin;
Controlher body:
ideal
is thin,her ofbladder
is full,butwomannot toohaving
full; herultrasoundbaby is active,
butbutnotnottootooactivethin; her bladder is full, but not too full; her baby is active, but not too active■Control of emotions: ideal woman having ultrasound is concerned but not■anxious,
Control engagedof emotions:
ideal
woman having ultrasound is concerned but not
but not
demandinganxious, engaged but not demanding“The super‐anxious ones are difficult…” Beatriz, Sonographer“The super‐anxious ones are difficult…” Beatriz, Sonographer“.. when woman comes in here with her girlfriend, that’s a nightmare. They talk about all their“..
when woman
comesin theirhere withherandgirlfriend,that’s…aAnd
nightmare.
They talkall their
shopping
expeditions
andfriends,
their social
I think, “Whatareabout
you doing
shopping
expeditions
and
their
friends,
andtheirsocial…
And
I
think,
“What
are
you
doing
here?” Beatriz, Sonographer
here?” Beatriz, Sonographer
14
14

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Slide: Catherine Mills
Choice and Consent in Prenatal Testing in Australia

Fetus as boundary object
Fetus as boundary object■ The apparatus of choice makes the fetus something about which one■makes
The apparatus
choices of choice makes the fetus something about which one

makes choices■These choices are ones about the differential valuation of life and possible■lives
These choices are ones about the differential valuation of life and possible
lives■ It also makes the normative status of fetus – its inclusion in moral■community
It also makes
normativeof fetuson– technology
its inclusion in moral
andthenormative
lifestatus–dependentcommunity and normative life –dependent on technology■ Intersects with medical normalization■ Intersects with medical normalization– Disability and norms– Disability and norms■ Not only choices made, but choices made available (Nancy Press)■ Not only choices made, but choices made available (Nancy Press)– social structures within which choices can be made at all– social structures within which choices can be made at all– The apparatus of choice tends to obscure this aspect of the material– The
apparatusof choice tends to obscure this aspect of the material
conditionsof choiceconditions of choice

15
15

Ultrasound and Cell-Free DNA test (NIPT)
Ultrasound and Cell-Free DNA test (NIPT)■Available at various clinics in Australia since about 200?
■
at varioussent
clinics
in Australia
since about
200?Genetic Services recently■Available
Samples generally
overseas,
but Victorian
Clinical■developed
Samples generally
overseas,
but Victorian Clinical Genetic Services recently
Australiansent
test,
called percept
developed
Australian
test,calledpercept– http://www.vcgs.org.au/perceptNIPT/– http://www.vcgs.org.au/perceptNIPT/ High rate of accuracy, but not diagnostic; amnio or CVS still Highrateforof accuracy,
requireddiagnosis but not diagnostic; amnio or CVS stillrequired for diagnosis
 12wk ultrasound still recommended (in conjunction with cfDNA 12wktest) ultrasound still recommended (in conjunction with cfDNA
test)
 Costs around $500; this is not subsidized by the govt, nor is Costs$500;
this is not subsidized
by thecfDNAgovt, nor
there aroundcurrently
any discussionof incorporating
testsis into
there
currently
any
discussionofincorporating
cfDNA
tests into
the publicly subsidized prenatal screening regime.
the publicly subsidized prenatal screening regime.
 As it only requires a blood test, there is no risk to the pregnancy.
As it only requires a blood test, there is no risk to thepregnancy.
 Other tests: Harmony, Panorama (microdeletions; tests for
http://www.vcgs.org.au/downloads/percep
tNIPT/CT‐W‐138v3_web.pdf, p1.
 Other
tests:Cri
Harmony,
tests forhttp://www.vcgs.org.au/downloads/percep
Angelman,du Chat,Panorama
DiGeorge,(microdeletions;
Prader‐Willi Syndromes)tNIPT/CT‐W‐138v3_web.pdf, p1.
16
Angelman, Cri du Chat, DiGeorge, Prader‐Willi Syndromes)
16

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Choice and Consent in Prenatal Testing

Choice and consent in non-invasive screening
Choice and consent in non-invasive screening■cfDNA tests such as percept require explicit patient consent; the standards of■informed
cfDNA tests
such areas percept
requireexplicit
patient consent; the standards ofconsent(supposed
to be)
appliedinformed consent are (supposed to be) applied■Ultrasound is also a form of non-invasive screening■Ultrasound is also a form of non-invasive screening■It does not require a consent form to be signed; the standards of informed choice■are
It does
nottorequire
a consent form to be signed; the standards of informed choicetaken
be sufficient.
are taken to be sufficient.
■There is no principled justification for this difference; the contradiction is an■historical
There is noprincipled
for this difference;the contradiction
is antesting)artefactof thejustification
ad hoc introductionof ultrasound(and now cfDNA
historical artefact of the ad hoc introduction of ultrasound (and now cfDNA testing)■Would a coherent system undo the requirement for consent in cfDNA, or introduce■itWoulda coherent system undo the requirement for consent in cfDNA, or introduce
for ultrasound?
it for ultrasound?
■While there are problems with consent procedures, the introduction of consent for■ultrasoundWhile theremay
are ameliorate
problems withconsent
procedures,the introductionof consent
forsomeof the negative
effectsof the apparatus
of choiceultrasoundmayameliorate
someof thenegative
effects of forthebeing
apparatusof choicein regards toultrasound– eg,makingwomen
responsible
informed,inregards toclinicalultrasound– eg,makingresponsible
for being informed,
addressing
concernwithlack ofwomenknowledge,
and associatedlack ofaddressing
with lack of knowledge, and associated lack of
preparation clinicalfor highconcern
risk results
preparation for high risk results
17
17

Conclusions
Conclusions■The apparatus of choice casts women as the principlan – indeed, only –■moralThe apparatus
choicecasts women
the principlan – indeed, only –agent whoofbears
responsibility
foras
PNTdecisions.
moral agent who bears responsibility for PNTdecisions.
■The clinical introduction of cell-free DNA testing in Australia, puts■pressure
The clinicalintroduction
cell-freeDNAtesting
Australia, putson theemphasisofon
informed
choiceforinnon-invasive
pressure
the emphasis
informed
choice for non-invasive
screening,onsince
it requireson
explicit
consent.
screening, since it requires explicit consent.
■Though consent is only a formalization of choice, a shift toward a■coherent
Though consent
only aacrossformalizationof choice,a shift techniques
toward a may
consent issystemnon-invasive
screeningcoherent
consent
systemacrossnon-invasive
screeningmay
alleviate someof thenegative
effectsof the apparatus
of techniques
choice.
alleviate some of the negative effects of the apparatus of choice.
■More research is required on whether a consent system would be■feasible
More researchis required
on whether a consent system would be.
or desirable
feasible or desirable.

Thank you!
Thank you!

69

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IGS Project Series 1
Choice and Consent in Prenatal TestingPower Point Slide: Azumi Tsuge

WHAT DO WOMEN WANTTO CHOOSE IN PRENATALTESTING
JAPAN?
WHAT DOIN
WOMEN
WANT
TO CHOOSE IN PRENATALTESTING IN JAPAN?
AZUMI TSUGE, PH.D

PROFESSOR AT MEIJIGAKUIN UNVERSITYAZUMI TSUGE, PH.D
PROFESSOR AT MEIJIGAKUIN UNVERSITY

1

1

PRENATAL TESTS IN JAPAN•The ratio of women undergoing

PRENATALTESTSINisJAPAN
prenatal genetic
tests
low in
••
••
•

Japan
The
ofall
women
undergoing
Onlyratio
3% ofpregnant
women
prenatal
genetic
tests
is
low otherinreceived prenatal diagnosis
Japanthan ultrasound scanning
Only
3% of
pregnant
Abortionis allallowed,but women
it is notreceivedprenataldiagnosis
otherallowed by
the reasonof fetalthanultrasound scanningabnormality
Abortion is allowed, but it is notallowed by the reason of fetal
abnormality

2

2
71

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Slide: Azumi Tsuge
What Do Women Want to Choose in Prenatal Testing in Japan?

•
•
•
•
•
•

Noninvasive+
Not
definitive
Noninvasive+
Ultrasoundscan
Not definitive
Maternal serum
marker screening
Ultrasoundscan(MSS) serum
Maternal
Cell-freefetal DNA
marker screeninginthe maternal(MSS)
blood (NIPT)
Cell-freefetal DNAin the maternal
blood (NIPT)

Invasive+
Definitive
Invasive+• Amniocentesis
Definitive• Chorionic villus
Sampling test
• Amniocentesis(CVS)villus• Chorionic
Sampling test
(CVS)

3
3

THE NUMBER OF
AMINIOCENTESIS AND MATERNALSERUMSCREENING
THE NUMBER
OF
AMINIOCENTESIS AND MATERNALSERUM SCREENING

25,00020,00025,00015,00020,000No. of Amnio(y)No. of MSS（ｚ）

10,00015,000No. of Amnio(y)5,000

No. of MSS（ｚ）

10,000

0
5,000

0

1987

1992

1997

2002

2007

2012

4
1987

1992

1997

2002

2007

2012

4
72

2

2

IGS Project Series 1
Choice and Consent in Prenatal Testing

THE NUMBER OF LIVE BIRTH BY
AGE GROUP（1950-2012）
THE NUMBER OF LIVE BIRTH BY
AGE GROUP（1950-2012）
250-0000

200-0000
250-0000

150-0000
200-0000

age of 35～
age of 40～44
age of 45～49
age of 50～
Subtotal of over 35

100-0000
150-0000

age ofof35～
Total
all agesage of 40～44
age of 45～49
age of 50～

050-0000
100-0000

Subtotal of over 35
Total of all ages

000050-0000

5
000

5

25

THE RATIO OF LIVE BIRTH BY
WOMEN OVER 35 YRS OLD
THE RATIOOF LIVE BIRTH BY
全出生数に対する３５才以上の女性による出生数割合
WOMEN OVER 35 YRS OLD
全出生数に対する３５才以上の女性による出生数割合

20
25

15
20
％
10
15

％

5
10

0
5

0

1950

55

60

65

70

75

80

85

90

95

2000

5

10

1950

55

60

65

70

75

80

85

90

95

2000

5

10

6
6

73

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Slide: Azumi Tsuge
What Do Women Want to Choose in Prenatal Testing in Japan?

THE GUIDELINE OF MATERNAL SERUM
MARKER TEST BY THE MINISTRY OF
HEALTH ISSUED IN 1999
THE GUIDELINE OF MATERNAL SERUM
MARKER
TEST
BYnot
THE
MINISTRY
1. A doctor
does
need
to tell OFa
HEALTH ISSUED IN 1999

pregnant woman actively about the
1. prenatal
A doctor test
doesusing
not need
to tellbody
amother's
pregnant
woman actively about the
blood.
testshouldusing mother'sbody
2. prenatal
The doctor
not recommend
blood.
easily the new genetic prenatal test

2. which
The doctor
should notrecommend
used mother's
blood
to a
easilythewoman.
new genetic prenatal test
pregnant
which used mother's blood to apregnant woman.

7
7

New prenatal testing should
be introduced with caution.
Practicing the test without
New prenatal testing should
consideration may bringbe introduced with caution.
social disruption.
Practicing the test without
consideration may bringsocial disruption.

Abortion
without
considerAbortion-ationwithoutmay
considerincrease-ation.
may 8
increase
.
8

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4

IGS Project Series 1
Choice and Consent in Prenatal Testing

MASS MEDIA FEARS AN
INCREASE IN THE NUMBER OFABORTIONSMASS MEDIA FEARS AN
INCREASE
IN THE NUMBER OF
BecauseABORTIONS• 1. New prenatal test is non-invasive so
Becausethat pregnant women choose to have
easilyor without• tests
1. Newprenataltest isconsideration.
non-invasive so• 2.
Sopregnant
results thatshowchoose
chromosomal
that
women
to haveabnormalityof without
fetus should
increase.
tests easily or
consideration.
• 3.
of abortions
2. Therefore
So results thethatnumber
show chromosomal
after
the testofwould
increasing.
abnormality
fetusbeshouldincrease.
• 3. Therefore the number of abortions
after the test would be increasing.

99

THE GUIDELINE FOR NIPT BY
THE JAPAN SOCIETY OF OB/GYN(JSOG)
IN 2013 FOR NIPT BY
THE GUIDELINETHE JAPAN SOCIETY OF OB/GYN• The test should not be widely(JSOG) IN 2013
introduced into general obstetric• clinical
The testpractice
should not be widely
introduced
into general• The
test should
only be obstetriccarried out inclinical practicepregnant
women with an increased
aneuploidy,
conducting• risk
The fortestfetal
shouldonly be carriedout inthetest inwomenmass screeningof generalpregnant
with an increased
pregnant
women
should conducting
be strictly
risk for fetal
aneuploidy,
prohibited.
the test in mass screening of generalpregnant women should be strictly
prohibited.

10
10

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Slide: Azumi Tsuge
What Do Women Want to Choose in Prenatal Testing in Japan?

THE RESULT OF NIPTFROM APR 2013-MAR 2014
THE RESULTPregnancies
OF NIPT 7740
100% 2014
FROM APR 2013-MAR
NIPT

amnio

Pregnancies 7740
Positive 142 100%
(1.8%)
NIPT(98.2%)

Positive 142(1.8%)

TrisomyNormal113amnio 13
Trisomy113
Termination
110

Termination
110

Normal13
continuation
1

continuation
1

0.6% of all
pregnant
women
0.6% of all
pregnant
women
Negative 7594
Negative 7594
(98.2%)

Fetal
death
2

Fetal
death
13

Termination
3

Fetal
death
2

Fetal
death
13

Termination
3

11
11

The Chronological View from the Criminal Abortion Law in the Penal
Code to the Maternal Body Protection Law
1907 Penal Code revised from 1880 It makes abortion severe crime.
1922
Birth Control Movement,
SangerAbortion
was invited
to Japan.
The ChronologicalView fromMargaret
the Criminal
Law
in the Penal
Code
to
the
Maternal
Body
ProtectionLaw
1923 A legal precedent to allow doctors to perform emergency abortion to
woman'slife. from 1880 It makes abortion severe crime.
1907 save
PenalaCoderevised1931 BirthFeminist(firstwave) organizedJapan wasBirthinvited
Control
League and1922
Control
Movement,
Margaret Sanger
to Japan.
Alliancefor
ReformoftheAnti-Abortion
Law.
Dr.
Ogino,
Kyusaku
1923 A legal precedent to allow doctors to perform emergency abortion
topublishedhistheoryfor
contraception(Ogino
Method).
save a woman's life.
1932
Ohta, Tenrei
invented
IUD (Ohta
Ring)BirthbasedControl
on Gräfenberg
1931 Dr.
Feminist(first wave)
organized
Japan
League Ringandin German
1930. of the Anti-Abortion Law. Dr. Ogino, Kyusaku
Alliance
forin Reform
1936
1937
1932

IUD and contraceptive
except for condom
were
publishedhis theory formethods
contraception(Ogino
Method). forbidden.
BirthOhta,
Control
Movement
quit. based
Ishimoto-Kato,
Shizue Ringwas
Dr.
Tenreiinventedwas
IUDforced(OhtatoRing)on Gräfenberg
arrested
forinBirth
Control expanding action.
inGerman
1930.

1940
1936
1937
1948

National
Eugenic ProtectionLawbasedforon
the Law
of Nazi,
Eugenic
IUD
and contraceptive
methods
exceptcondomwere
forbidden.
Sterilization
Birth Control Movement was forced to quit. Ishimoto-Kato, Shizue was
Eugenic forProtection
Law legalized
abortionarrested
Birth Control
expandingaction. under conditions. However
penal
code
of
abortion
issuedin
1907
continue
operate.
12
National Eugenic Protection Law basedon thetoLaw
of Nazi, Eugenic

1940
1948

Sterilization
Eugenic Protection Law legalized abortion under conditions. However
penal code of abortion issued in 1907 continue to operate.
12
76

6

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IGS Project Series 1
Choice and Consent in Prenatal Testing

Japanese History concerning Prenatal Testing1950 Reform of Eugenic Protection Law Women can have an abortion foreconomic (social) reason as well as her health reason.
Japanese
History
concerning
Prenatal
1966 A local
government
startedtheTesting“policy of prevention of unhappy children.”

It compensatespartially
cost of amniocentesis.
1950 Reformof Eugenic
Protection
Law Women can have an abortion foreconomic (social) reason as well as her health reason.
1973 Anti-abortion movement scheme to delete the term of abortion byeconomicalreason.started
Medicalassociation
demands
abortion children.”by fetus
1966 A
local government
the “policyof preventionof unhappy
abnormalities.
However,theseamendments
did
notsucceedbecauseIt compensates partially cost of amniocentesis.
Disabled movement and women’s liberation movement are against it
1973 Anti-abortion movement scheme to delete the term of abortion bystrongly.
economical reason. Medical association demands abortion by fetus
1974 Disabled
movement
criticized
the policy ofdid
prevention
for unhappy
abnormalities.
However,these amendments
not succeed
becausechildren. So
it was reformed.
Disabled
movement
and women’s liberation movement are against it
strongly.
1974 Disabled movement criticized the policy of prevention for unhappy
1982 Anti-abortion
which demanded to delete the term of abortion
children. So itmovement
was reformed.
by economical reason clause was again arisen. However, it failed tosubmit a bill to the Diet.
1996
of Eugenic
Protection
Law to Maternal
ProtectionLaw1982 Reform
Anti-abortion
movement
which demanded
to deleteBody
the termof abortion
becauseEPL
discriminate
peoplewithdisabilities.
by economical reason clause was again arisen. However, it failed to13
submit a bill to the Diet.
1996 Reform of Eugenic Protection Law to Maternal Body Protection Law
because EPL discriminate people with disabilities.

13

Brochures published by the measure room to prevent that
unhappy children in Hyogo prefecture around 1970

14

Brochures published by the measure room to prevent that
unhappy children in Hyogo prefecture around 1970

14

77

7

Slide: Azumi Tsuge
What Do Women Want to Choose in Prenatal Testing in Japan?

15
15

Research Methods
Research Methods
Questionnaireand Interview in 2003 in
Tokyo;
Questionnaireand Interview
in 2003 in•375 valid responsesof Questionnaire
Tokyo;• 26 interviewees•375 valid responses of QuestionnaireWestarteda bigger research project from• 26
interviewees
2013.

We started a bigger research project from
2013.

16
16

78

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IGS Project Series 1
Choice and Consent in Prenatal Testing

Poster79

Photo Gallery

Photo Gallery

Seminar: Choice and Consent in Prenatal Testing
November 18th, 2015
Room # 408, Graduate School of Humanities & Science Building

80

IGS Project Series 1
Choice and Consent in Prenatal Testing81

Photo Gallery

82

IGS Project Series 1
Choice and Consent in Prenatal Testing83

IGS Seminar “Choice and Consent in Prenatal Testing”―出生前検査における選択と同意―【Coordinator】
コーディネーター
Yukari Semba (IGS Project Research Fellow, Ochanomizu University)
仙波由加里（お茶の水女子大学 ジェンダー研究所 特任リサーチフェロー）【Staff】
スタッフ
Miyuki Daimaruya (IGS Project Research Fellow, Ochanomizu University)
臺丸谷美幸（お茶の水女子大学 ジェンダー研究所 特任リサーチフェロー）【Organizer】
Institute for Gender Studies, Ochanomizu University
お茶の水女子大学 ジェンダー研究所

IGS Project Series 1
IGS Seminar “Choice and Consent in Prenatal Testing”
Edited by Yukari Semba
編集担当：仙波由加里
Published by Institute for Gender Studies, Ochanomizu University
2-1-1 Otsuka, Bunkyo-ku, Tokyo 112-8610, Japan
発行：お茶の水女子大学ジェンダー研究所〒112-8610 東京都文京区大塚 2-1-1
Tel: 03-5978-5846
igsoffice@cc.ocha.ac.jp
http://www.igs.ocha.ac.jp/index.html
Issued in March, 2016
発行：2016 年 3 月