Download I. Selective abortion and discrimination

The Ethical Implications of NIPT in the
Netherlands
Frans Alkemade (4165152)
Philosophy bachelor thesis
Utrecht University
29/06/2016
Abstract
Prenatal screening for aneuploidy is a controversial procedure that raises a number of important
ethical issues, some of which are related to the methods in general such as the safety of the
mother and foetus, and others to a more societal point of view such as autonomy of pregnant
women or the possibility of discrimination towards people with aneuploidy. These moral
implications are of great importance for future policymakers to gain a broader understanding on
this delicate matter. This is needed as the Dutch government plans on adding a new non-invasive
prenatal test (NIPT) to the basic healthcare, with the goal to offer the test to women of all ages
free of cost. NIPT seems to facilitate selective abortion, giving prospective parents the choice of
giving birth to a child with abnormalities or not. Persons with aneuploidy might get offended by
this, as it may strengthen the belief that life with aneuploidy is not worth living. From a different
perspective, pregnant women can get more information of their unborn child at an earlier stage in
pregnancy than before which will greatly increasing the possibility of informed decision making.
But the state might be pushing this too much, with the possibility of making women feel obligated
to take the test. As more nations start to include NIPT in their basic healthcare, it is important for
society to understand what kind of fundamental issues we are dealing with by offering this test on
such a large scale. The right policies have to be made to prevent sending out the wrong message.
1
Table of Contents
Introduction............................................................................................................................................. 3
I. Selective abortion and discrimination .................................................................................................. 4
II. Pregnant women’s autonomy ............................................................................................................. 8
III. State influence .................................................................................................................................. 12
Conclusion ............................................................................................................................................. 14
Bibliography........................................................................................................................................... 15
2
Introduction
Prenatal screening for birth defects has once again sparked debate in the Netherlands, as the
minister of health Edith Schippers has planned to implement a new prenatal screening procedure
into the public health system by 2017.1 This procedure will be made optionally available for every
pregnant woman, and the aim is to have the costs covered by basic healthcare insurance.2
This new method is called the Non-Invasive Prenatal Test (NIPT). Non-invasive means that no
probing into the foetus is done, thereby avoiding risk of miscarriage.3 With just a drop of maternal
blood, a highly accurate analysis can be made of the foetus’ well-being. It can be performed as early
as the first trimester (11th week of pregnancy), which is significantly earlier than is possible with older
screening methods.4 It is also more easily available, as blood can be drawn by a nurse, as opposed to
the traditional methods which are challenging procedures that require the skills of a trained
specialist with sufficient experience.5
As of 2016, the test is already available for women with increased risk of having a child with
birth defects, but the majority of the Dutch parliament wants it implemented in the standard
healthcare, thus making it available for every pregnant woman in the Netherlands.6
What is important to take into consideration is that the current methods of prenatal testing
are not ideal: some methods are not always available for everyone (only if you have increased risk of
bearing a child with birth defects due older age or genetics), some have a high risk of causing
miscarriages due to probing into the foetus or placenta, and some are simply too inaccurate. So this
new NIPT-test seems like a more reliable, easy and safe method. And by offering this test to all
pregnant women instead of a select few, women will become more informed on their pregnancy
which will increase the possibility of informed choices and thus autonomy. Participating in NIPT does
not necessarily mean that abortion will follow. It can also help the prospective parents to make
suitable preparations for their disabled child, to make sure they can offer proper care.
Despite the benefits, many criticize the full implementation of NIPT. Critics claim that the
government is actively trying to reduce the amount of people with birth defects, creating a ‘eugenic’
society where there is no place for the ‘weak’.7 They find it to be discriminating towards people that
live with conditions that are reasons for others to terminate pregnancy. While this might be desirable
for diseases and conditions that are known to cause infant mortality as this would prevent suffering
for both the child and parents, this particular screening method is mainly used for its high accuracy in
detecting chromosome defects (aneuploidy) that may lead to conditions such as Down’s syndrome.8,9
1
Unknown author (2016), “NIPT-test vanaf 2017 voor iedereen”, in NOS.nl (http://nos.nl/artikel/2090191-nipttest-vanaf-2017-voor-iedereen.html), accessed on 10/05/2016
2
Ibid.
3
Invasive methods are notorious for their high risk of miscarriage. A needle is probed directly into the foetus or
placenta to extract blood or amniotic fluid, testing for the presence of certain proteins that may indicate
chromosome defects in the foetus. The chance that this procedure causes a miscarriage is 1 in 200. See:
Unknown author (2016), “Prenatale Screening”, in VUMC.nl https://www.vumc.nl/afdelingen/prenatalescreening/combitest.doc/6830510/ (accessed on 05/05/2016)
4
Most methods can only be performed at the second trimester. See: Vanstone et al. (2014), “Non-Invasive
Prenatal Testing: Ethics and Policy Considerations”, in J Obste Gynaecol Can, vol.36 no.6 p. 515
5
Ibid. P.517
6
Increased risk occurs due genetics or the women being over 35 years of age. See: Unknown author (2016),
“NIPT-test vanaf 2017 voor iedereen”, in NOS.nl (http://nos.nl/artikel/2090191-nipt-test-vanaf-2017-vooriedereen.html), accessed on 10/05/2016
7
Renate Lindeman (2015), “Down syndrome screening isn’t about public health. It’s about eliminating a group
of people.” Washington Post, https://www.washingtonpost.com/posteverything/wp/2015/06/16/downsyndrome-screening-isnt-about-public-health-its-about-eliminating-a-group-of-people/ (accessed on
02/05/2016)
8
NIPT has a 99% accuracy in detecting trisomy-21, the chromosome defect that causes Down’s syndrome. See:
Unknown author (2016), “Veelgestelde vragen”, in Meer over Nipt, http://meerovernipt.nl/veelgesteldevragen#12 (accessed on 04/05/2016)
3
The main controversy about screening for aneuploidy that I will be handling in this essay is
that positive test results are shown to lead to more terminated pregnancies, despite the fact that
Down’s syndrome itself is not a fatal condition. So, while this abnormality is not dangerous for the
foetus, it is still appears to be a very unwanted condition for prospective parents. For example, since
the implementation of NIPT in the Danish healthcare system, the number of children born with
Down’s syndrome have decreased by 95 percent since 2007.10
In this essay, I would like to contribute to this discussion by answering the question about
what the biggest and most fundamental moral implications are of making NIPT available for every
pregnant woman through the healthcare system. I will start this essay by pointing out how NIPT may
be promoting selective abortion, and how this could negatively affect people with Down’s syndrome
in our society by discriminating them based on their identity. From there I will make a shift to the
perspective of the pregnant woman: how should their autonomy be understood in this debate? Does
their right to self-determination overrides the duty to act nonmaleficent? Finally I will be taking a
closer look at the role of governmental policy-making within reproductive rights. Should the state
increase women’s autonomy by giving her more information and choice, or should the state hold
back because it also emits some sort of social pressure of taking the test? All the arguments made
will come together in a concise conclusion.
I. Selective abortion and discrimination
At first, one might recognize similarities between the discussion about NIPT and the
‘traditional’ abortion debate, as in both cases the discussion seems to be mainly about the tension
between the autonomy of the pregnant woman (and possibly her partner), and the foetus’ right to
live (the debate about being “pro-choice” or “pro-life”).11 However, what we’re dealing with in the
case of NIPT, or any method of prenatal screening for that matter, is selective abortion.12 The
difference between abortion and selective abortion is that the question is no longer whether a
pregnant woman wants to give birth to the unborn child or not; it is about whether a pregnant
woman wants to give birth to a child with abnormalities or not. Thus, the couple chooses to have a
specific child or not, which to some sounds a lot like eugenics.13 This is, of course, if the foetus of the
pregnant woman was positively tested for Down’s syndrome, and the woman or couple has decided
to actually terminate the pregnancy solely based on that result. Let’s call this the eugenics argument.
Other reasons to oppose to NIPT are somewhat similar to the eugenics argument. For
instance, one of the consequences of selective abortion after positive NIPT results is that it may send
9
Terry Hassold et al. (2007), “The origin of human aneuploidy: where have we been, where are we going”, in
Human Molecular Genetics, vol. 16, no. 2 p.1
10
Crombag et al. (2014), “Explaining variation in Down’s syndrome screening uptake: comparing the
Netherlands with England and Denmark using documentary analysis and expert stakeholder interviews”, BMC
Health Services Research, 14:437 p.8
11
I would like to make it clear that I will not be discussing the moral status of the foetus, as discussing the
moral status of a foetus would be enough to write an entire essay about. I will however make one statement
on the matter and that is by quoting Hursthouse (1991), who has written a very influential essay on abortion. In
Virtue Theory and Abortion, she states that the status of the foetus simply isn’t relevant to the rightness or
wrongness of abortion. She says that it’s status is only relevant in biological facts, such as that pregnancy
results from sexual intercourse and that it lasts about nine months in which the foetus develops into a human
being. See: Hursthouse (1991), “Virtue Theory and Abortion”, Philosophy & Public Affairs, vol.20 no.3 p.235
12
Wilkinson (2015), “Prenatal Screening, Reproductive Choice, and Public Health”, Bioethics, vol. 26. No. 1 p.27
13
Eugenics literally means “good birth”, but it is mostly connoted to the belief that humanity will ‘improve’ by
preventing people with undesirable traits to reproduce or are prevented from being born at all. See: Kevles
(1992), “Out of eugenics: the historical politics of the human genome”, Social Issues in the Human Genome
Project p.4
4
out a negative message towards the members of our society who live with these disabilities.14 The
disability that these people have becomes a reason for others to terminate their pregnancy, which
strengthens the widely-held belief that life with a disability is not worth living.15 This is morally
problematic because it expresses negative or discriminatory attitudes towards people who carry
disabling traits, not just towards the disabling traits itself.16 This is called the expressivist argument.17
The central idea of this argument is that the use of prenatal testing for disabling traits (and the
abortion that may follow) expresses a hurtful attitude towards people who live with those same
traits.18 It can be seen as way of saying that ‘we do not want any more like you’. Thus, it is argued
that the act of prenatal screening may work very stigmatizing for the disabled.
One can imagine that NIPT gets a lot of opposition from disability rights movements for this
reason alone. According to Gonter (2004), disability rights movements suggest that because of the
negative message this sends out to the disabled people in our society, we need to question the
consequences of reproductive technologies and abortion policies for everyone with a disability.19 This
is called the disability critique, which proceeds from the view that discrimination occurs when people
from one group fails to imagine that people in another group are able to lead lives as rich and
complex as their own.20 They state that the desire of prospective parents to avoid raising children
with disabilities may be based on that failure.21
Another argument against selective abortion caused by NIPT is that it might even weaken the
effort to increase the quality of life for people that live with certain disabilities.22 Shakespeare (1995)
states that as conditions become rarer, the drive to discover a cure or treatment diminishes.23
Although a cure for Down’s syndrome is not possible as it is not a disease but a disability, research is
still needed to develop proper care for people with Down’s syndrome. Shakespeare stresses this
point because he believes genetic screening will never be total: disabilities will never be eliminated,
just heavily reduced at most. This means that disabled people will be further isolated, face increased
prejudice, and the pressure to make society accessible to all will be reduced.24 Buchanan (1996) calls
this the loss of support objection.25 Although Shakespeare lacks empirical evidence on this claim in
his thesis, it is still very plausible. Why spend the same amount of money and effort on care for the
disabled if there are only a few dozen people left with Down’s syndrome?26 If our society will be less
adapted at the special needs of people with aneuploidy, they might even get more disabled than
they are now as they will be less able to function independently within our society.
Another fundamental element of the expressivist objection, as Edwards (2004) has pointed
out, is that it is based on a view of the relationship between disability and identity where the
disabling trait is considered a significant part of one’s identity.27 This explains why selective abortion
14
Gonter (2004), “The Expressivist Argument, Prenatal Diagnosis, and Selective Abortion: An Appeal to the
Social Construction of Disability”. In: Macalester Journal of Philosophy. Vol. 13, issue 1, article 3, p.2
15
Wendell (1996), The Rejected Body: Feminist Philosophical Reflection on Disability (New York: Routledge)
p.162
16
Ibid. P.6
17
Ibid. P.2
18
Ibid.
19
Ibid.
20
Ibid.
21
Ibid.
22
Tom Shakespeare (1995), Back to the future? New genetics and disabled people. Critical Social Policy, 15(2/3)
p.31
23
Ibid.
24
Ibid.
25
Buchanan (1996) Choosing who will be disabled: Genetic intervention and the morality of inclusion. Social
Philosophy & Policy, vol.13 no.1 p.21
26
Gavagahn (2006), “Right Problem, Wrong Solution: A Pro-Choice Response to “Expressivist” Concerns about
Preimlantation Genetic Diagnosis”, Cambridge Quarterly of Healthcare Ethics p.22
27
Edwards (2004), “Disability, identity and the “expressivist objection”, J Med Ethics p.418
5
is considered discriminating for disabled people: abortions are being terminated based on a
condition that makes up a large portion of the identity of others. What makes it troublesome is that
these people never actually chose personally to let their disability be part of their identity. According
to Edwards this is due to the fact that society tends to label them first by their visible disability over
other traits. This argument is backed up by Riddell et al. (2001), who states that disabled people are
very delimited in the range of identities they can choose from if their disability is clearly visible
because of societal labels and ascriptions.28 People with Down’s syndrome often do have
characteristics similar to their family members, such as hair- and eye colour or certain mannerisms,
yet these people are often first labelled by their disability. This makes them vulnerable for the
negative attitudes towards a disability quite offensive to people on a personal level.29 Thus, here it is
argued that the wrongness of prenatal screening is based on the harm that is done on the existing
people with disabilities by attacking their identities.30 Let’s call this the identity argument. Although I
do find this last argument plausible, my question here is if this objection is justified. Is disability
something that constitutes ones identity? According to Edwards, those who oppose to the
expressivist argument rarely consider this.31
Different properties could belong to the way someone defines oneself as a person, and these
properties may change overtime as one’s personal identity is contingent and changeable.32 However,
some properties of people are not always changeable, such as ethnicity or chronic disability. But
even though these properties are not changeable, Olson (2015) states it is still dependent on how
much importance the individual attaches to this.33 Where I am getting at here is that whether people
with Down’s syndrome would feel truly offended by selective abortion seems to depend on how
much they identify themselves with their condition. I believe this is kind of difficult to determine in
the case of Down’s syndrome, as the degree of awareness of their genetic condition seems to vary
between individuals.34 Johnstone (2004) emphasizes this by stating that identity in the case of
disability is not a homogenous experience.35 He says that rather, multiple definitions and expressions
of identity are reviewed and organized into categories of similarity.36 It is therefore impossible to
construct a conception of unitary identity for people with disabilities, let alone make assumptions on
this specific population whether they attach importance to their condition or not. Because it appears
to be difficult to determine whether the majority of people with Down’s syndrome actually identify
themselves with their condition or regard it as an important aspect of who they are, I find that the
identity argument is not that convincing within this discussion.
Perhaps the possible immoralities regarding NIPT should not be argued from a personal level
for people with aneuploidy, because it appears to be too difficult to determine whether these
individuals actually feel discriminated by it. We can, however, look at the problem from a meta-level
by making an analysis of the concept of disability itself. Selective abortion is performed on foetuses
that we regard to be disabled, but this concept actually seems to be quite difficult to define purely in
biomedical terms, as Gonter (2004) has pointed out that both biological and social aspects are
interactive in creating the term.37 How I see this as relevant is because of the following: if selective
abortion is performed on disabled foetuses, we might deem their lives unworthy to live because of
28
Riddell et al. (2001), The Learning Society and People With Learning Disabilities (Bristol: The Policy Press) p.57
Edwards (2004), “Disability, identity and the “expressivist objection”, J Med Ethics p.419
30
Parens (2000), Prenatal Testing and Disability Rights (Georgetown: Georgetown University Press) p.8
31
Edwards (2004), “Disability, identity and the “expressivist objection”, J Med Ethics p.419
32
Olson (2015), “Personal Identity”, in Stanford Encyclopaedio of Philosohpy,
http://plato.stanford.edu/entries/identity-personal/ (visited on 02/05/2016)
33
Ibid.
34
Sotko et al. (2011), “Self-perceptions from People with Down Syndrome”, Am J Med Genet A p.2
35
Johnstone (2004) , “Disability and Identity: Personal Constructions and Formalized Supports, Disability
Studies Quarterly, vol.24, no.4
36
ibid
37
Gonter (2004), The Expressivist Argument, Prenatal Diagnosis, and Selective Abortion: An Appeal to the
Social Construction of Disability”, Macalester Journal of Philosophy. Vol. 13, issue 1, article 3, p.3
29
6
the many disadvantages it may have. But how can we select on disability if there isn’t really a
satisfying, universal, purely medical margin of when we consider someone disabled?
It wasn’t until the 19th century until scientific thinking tried to categorize disabilities, despite
the fact that philosophers have always lived among people with impairments.38 In some ways, the
discussion is very similar like sex or race in philosophical topic, as difficulty arises in questions about
the extent to which it is based on biological facts or social constructs.39 The idea that the term
‘disability’ is largely a social construct is comparable to the feminist standpoint that our idea of
gender is largely socially constructed. 40 For example, if you are born a woman, in some countries you
will not able to go to school because of your gender, even though women are perfectly capable of
following education just as good as men. In the case of disability, consider that in less technological
societies people are more likely to be considered disabled since the standards for normal ability and
function are necessarily higher.41 A person born with one arm in a technologically advanced society
has access to better prosthetics to compensate for the fact that he has one arm, which he would not
have access to in less technological societies due to lack of sufficient means. Having access to
advanced prosthetics results in increased possibilities and quality of life. I believe this is also true for
people with Down’s syndrome. The quality of life of people with Down’s syndrome has arguably
improved over the years, which means that these people are not has helpless as often thought: some
live happy, rewarding and fairly independent lives.42 It goes without saying that these people would
have been more ‘disabled’ in developing countries where proper care is often lacking the right
means. Selective abortion of foetuses with aneuploidy could be more understandable in those
countries as some disabilities may cause a lot more suffering there than it would in the Netherlands
for example. So, it is argued that it seems somewhat arbitrary to perform selective abortion on
disabled foetuses when the concept of disability is dependent on a social context in order to
determine its severity. Which in case of Down’s syndrome probably isn’t that severe in countries
such as the Netherlands.
Another objection is that prenatal diagnosis of a disability, followed by selective abortion,
can be viewed as reinforcing the medical modal that disability itself, not societal discrimination
against people with disabilities, is the problem to be solved.43 According to Gonter (2004), this is
regarded as a more subjective rejection of a specific type of person, or foetus, as opposed to any
foetus that would have been removed because of other reasons to abort such as family size, income,
or own health, which Gonter views as more objective reasons to choose for abortion.44 I do not fully
agree with Gonter on this point. I think this is a weaker argument compared to the other
counterarguments I’ve handled so far. I agree that the concept of disability is largely a social
construct, and that this is problematic when the termination of pregnancies depends on such an
arbitrary term. Yet I believe that selective abortion can have the same type of underlying reason or
motivation as a non-selective abortion. It does not necessarily have to be about ‘getting rid’ of all the
people with aneuploidy. For most women it is a personal decision, and having an abortion based on
their own reasons is their right to self-determination. I will continue to argue for the right to selfdetermination and female autonomy in the next chapter.
38
Wasserman et al. (2016),”Disability: Definitions, Models, Experience”, Stanford Encyclopaedio of Philosohpy,
http://plato.stanford.edu/entries/disability/#StiSocConDis (accessed on 03/06/2016)
39
Ibid.
40
Ibid.
41
Ibid.
42
Alderson (2001),”Down’s syndrome: cost, quality and value of life”, Social Science & Medicine vol. 53 p.629
43
Gonter (2004), The Expressivist Argument, Prenatal Diagnosis, and Selective Abortion: An Appeal to the
Social Construction of Disability”, Macalester Journal of Philosophy. Vol. 13, issue 1, article 3, p.5
44
Ibid. P.6
7
II. Pregnant women’s autonomy
Thus far I have only looked at the aspects of NIPT that might lead to unfavourable situations
such as discrimination and stigmatization of disabled people. In this chapter, I will be looking at the
moral aspects of NIPT from a different perspective: the perspective of the pregnant woman as an
autonomous agent in reproductive rights.
To be able to analyze the status of maternal autonomy in this matter, I will have to start with
the basic concepts. Autonomy, or the right to self-determination, forms one of the fundamental
concepts in medical ethics and policies. According to the Swedish National Council on Medical Ethics
(SNCME, 2006) for example, each person has the right to make decisions about their own life in
accordance with their own view of what a good life is.45 Therefore, in light of prenatal diagnosis, an
individual must be entitled to choose what she wants or does not want to know about her future
children’s risks of diseases or impairments.46 And this means any condition, not just the fatal ones.
The individual has a right to decide for herself whether to accept the diagnosis NIPT gives, and must
be free to act on the result if she wishes to do so.47
It is important to realize that participating in NIPT does not necessarily mean that an abortion
will follow. NIPT may also be appealing to women who do not wish to terminate their pregnancy in
case of aneuploidy, but who want to have more information about what kind of disability the child
will have. Based on this information, the soon-to-be parents can start making preparations for when
their disabled child is born.48 Therefore I argue that the parents that choose to keep the disabled
child are more able to offer suitable care because they were able to make an informed choice.
Arguments in favour of NIPT are not only made when the pregnant couple makes an
informed choice to keep the disabled child. Even if the parents decide to get the foetus removed
based on prenatal diagnosis, the emphasis on maternal autonomy still forms a key element in the
criticism against theories such as the expressivist argument. As stated before, the expressivist
argument is that selective abortion based on prenatal diagnosis expresses hurtful attitudes to the
disabled. Edwards (2004) has argued against the expressivist argument that even if harm is done
towards the disabled by the choice to terminate a pregnancy because of a disability, this does not
necessarily entail that the obligation not to harm others is placed morally above the right to have
one’s own reproductive autonomy respected.49 Of course one is obliged to take into account the
consequences of one’s actions which might hurt others, but according to Edwards it does not
necessarily entail that those harms have higher moral value than the constraint of one’s free
choice.50 For example, one might choose to be a meat-eater even though a vegetarian might find this
offensive. But just because a vegetarian finds this offensive, it does not mean that the meat-eater
should be making restrictions to his own autonomous choices about his dietary preferences.
Although I do not find this personally to be a good comparison51, I can see where Edwards is going at.
I believe his point is that one’s free will regarding life-choices should not be oppressed if someone
else might not agree with their life-choices. I will call this argument the life-choice argument.
Glover (2006) adds to the life-choice argument by emphasizing that one is also perfectly
capable of valuing a person that has a disability while at the same time devaluating the disability
itself.52 One does not rule out the other. He does however state that we need to send a clear signal
45
Swedish National Council on Medical Ethics (2006), Prenatal Diagnosis: the Ethics p.8
Ibid.
47
Ibid.
48
Vanstone et al, “Non-Invasive Prenatal Testing: Ethics and Policy Considerations”, in J Obste Gynaecol Can
(2014) 36(6) 515 – 526
49
Edwards (2004), “Disability, identity and the “expressivist objection”, J Med Ethics p.419
50
Ibid.
51
This is an issue about terminating pregnancies based on disability instead of a debate over dietary
preferences, so I’m not entirely sure if the same rules would apply here. But it is an argument used in favour of
(selective) abortion.
52
Glover (2006), Choosing Children: Genes, Disability and Design (Oxford: Oxford University Press) p.34
46
8
that we do not have a motivation of ‘cleansing the world’ of people with disabilities.53 According to
Glover, thinking that a particular disability makes someone’s life less good is not the same as
expressing hateful attitudes towards disabled people, but we must be very clear on this.54
Elena Gates (1993) further supports the life-choice argument by stating that the autonomy of
the pregnant woman is in fact morally the autonomy of the foetus. This is because she does not
regard the foetus to be an autonomous individual.55 I am going to refrain from discussing the moral
status of the foetus as I said in the beginning of this essay, but I want to use this argument from
Gates to gain more perspective on how the autonomy of pregnant women is to be understood.
According to Gates, the concept of autonomy must be understood as the moral right to choose and
follow one’s own plan of life and action. This seems to be in line with the definition of autonomy
given by the SNCME. It is important to note that this moral right is in fact overriding in the case of
abortion, which gives the pregnant woman always the right to end her own pregnancy if she wishes
to do so. Based on these assumptions, the conclusion can be made that this is also the case with
selective abortion. It is the pregnant woman’s autonomous choice, therefore the grounds on which
she chooses to do so become irrelevant as long if she is expressing her own autonomy.
The definitions of autonomy given by the SNCME and Gates bear a resemblance to the
Kantian moral philosophy (deontology), the right to self determination through autonomous choice is
regarded to be of high moral value. According to Kant’s moral theory, this autonomy or right to selfdetermination is understood to be defined by the will of the rational human.56 The moral obligations
that bound our will are those that we impose on ourselves while simultaneously regarding them as
universally binding for all rational beings.57 Freedom of the individual plays a large role in this
conception of autonomy: we may think of a person as free when that person is only bound by her
own will and not by the will of another. Only then will the agent’s actions be expressed by her own
will, not the will of someone or something else. What is basically comes down to is that we are
bound by laws of duty, and these laws are given to ourselves. This is how we express our autonomy.
But you cannot just lay laws upon yourself and act by them to act both autonomously and morally.
Another key factor in understanding autonomous moral behaviour in the Kantian tradition is
rationality, an important condition to be able to act autonomously in the first place. We have to use
our rationality to test if the laws that we lay upon ourselves are actually universal by formulating a
maxim, which are principles on which we act. The implications of the Categorical Imperative must
then be used to rationally evaluate if our motives are moral: can this motive be thought and willed as
a universal law? What if my motive was the universal method of achieving a certain goal? Is it
possible to conceive acting on that maxim in such a world? 58
Now, to get back to the justification of selective abortion. Since there are similarities in how
the SNCME and Gates (pro-selective abortion) define autonomy, perhaps this could mean that
selective abortion might be justifiable through deontology as well: the freedom to act according to
one’s own will is the central point of Kant’s moral philosophy after all. However, it appears that the
Kantian framework actually disallows performing abortions of any kind. As Gensler (1986) pointed
out, the act of abortion is morally unjustified, because deontology demands of us “that we make
similar ethical judgments about the same sort of situation regardless of the individuals involved”.59
53
Ibid.
Glover (2006), Choosing Children: Genes, Disability and Design (Oxford: Oxford University Press) p.35
55
Gates (1993), “Ethical Considerations in Prenatal Diagnosis, Fetal Medicine p.391
56
Johnson (2008), “Kant’s Moral Philosophy”, Stanford Encyclopedia of Philosophy
http://plato.stanford.edu/entries/kant-moral/#Aut (accessed on 26/05/16)
57
Kemerling (2011), “Kant: The Moral Order”, Philosophy Pages http://www.philosophypages.com/hy/5i.htm
(accessed on 01/06/16)
58
Johnson (2008), “Kant’s Moral Philosophy”, Stanford Encyclopedia of Philosophy
http://plato.stanford.edu/entries/kant-moral/#Aut (accessed on 26/05/16)
59
Gensler (1986), “A Kantian Argument Against Abortion”, Philosophical Studies: An International Journal for
Philosophy in the Analytic Tradition,vol.49 no.1 p90
54
9
How this exactly forms a problem for the justification of selective abortion becomes clear when we
take a look at Gensler’s argumentation against abortion that results from this interpretation:
1. If you are consistent and think that abortion is normally permissible, then you will consent
to the idea of yourself having been aborted in normal circumstances.
2. You do not consent to the idea of yourself having been aborted in normal circumstances.
3. So, if you are consistent then you will not think that abortion is normally permissible.60
This argumentation is based on logical consistency and the universalizibility test. The immoral status
of abortion comes from the assumption that the vast majority of rational individuals would not
consent to the idea of being aborted themselves when being a foetus, therefore these people cannot
rationally think that abortion is morally permissible. Because how can one possibly be happy to be
alive if they proclaim that it is perfectly fine to terminate a pregnancy?
There is an answer to Gensler’s argumentation which is consistent to the Kantian approach.
According to Feldman (1998), normal, rational individuals can indeed be happy to be alive while at
the same time proclaiming that being aborted as a foetus would have been acceptable.61 She states
“that we are happy to be alive is compatible with our willing that history had been different and that
the tragedies and exploitations leading to our births had never happened, even though that would
mean that we would have never existed.”62 The point Feldman makes basically comes down to the
possibility of being happy to be alive while at the same time being able to will a different history
which results in never being born.63 By being able to consistently hold these views without being
illogical, we are able to universalize maxims of abortion. This seems to applicable to selective
abortion as well, albeit in a different formulation: we can be accepting towards disabled people, and
at the same time have will to be aborted should we had been disabled.
But there might be another solution in favour of selective abortion as well. One could say
that the conditions to perform selective abortion are not exactly normal circumstances; as this
specific case is about foetuses with Down’s syndrome. A reason for Kant to be in favour or selective
abortion is that people with Down’s syndrome would often not have the rational capability to ever
become fully autonomous agents, as rationality forms the key element in self-determination. It
would be irrational for people to consent to the idea of being born with Down’s syndrome, knowing
that this condition will make us less rational and thus less capable of acting autonomously.
Back to Feldman. She continues her argumentation by saying that “when we are morally
assessing actions, we are dealing with their maxims – the subjective principle of an act, which
highlights the agent’s reasons and desires.”64 Feldman thinks that people mistakenly regard
pregnancy as something passive, whereas it is not. She believes that because of the social views,
women are not seen as true moral agents in pregnancy because of the facts of reproductive biology.
According to Feldman, it is thought that women are biologically meant to bare children and this
overrides their autonomy.65 Feldman stresses that women are the ones actively partaking in
pregnancy, and they have their own reasons to terminate it if they want to. To disregard this right to
self-determination in the whole debate is what makes arguments such as Gensler’s flawed. Women
have reasons for getting an abortion, and these reasons are central in discussing the morality of
60
Gensler (1986), “A Kantian Argument Against Abortion”, Philosophical Studies: An International Journal for
Philosophy in the Analytic Tradition,vol.49 no.1 p90
61
Feldman (1998), “From Occupied Bodies to Pregnant Persons: How Kantian Ethics Should Treat Pregnancy
and Abortion”, Autonomy and Community: Readings in Contemporary Kantian Social Philosophy, p.269
62
Ibid.
63
McCoy (2011), “Kantian Moral Philosophy and the Morality of Abortion, forthcoming, p.145
64
Feldman (1998), “From Occupied Bodies to Pregnant Persons: How Kantian Ethics Should Treat Pregnancy
and Abortion”, Autonomy and Community: Readings in Contemporary Kantian Social Philosophy, p.269
65
Feldman (1998), “From Occupied Bodies to Pregnant Persons: How Kantian Ethics Should Treat Pregnancy
and Abortion”, Autonomy and Community: Readings in Contemporary Kantian Social Philosophy, p.270
10
abortion within a Kantian framework.66 A woman is more than just an ‘incubator’ of the foetus, the
fact that she is an autonomous rational agent is something that must always be taken into
consideration. By holding the view of women as mere vessels of the foetus, we are immorally
objectifying them.67 Feldman says that we can avoid this immoral objectification by emphasizing their
activity and agency in pregnancy.68 She adds to this that “to be a moral agent is to make choices, and
to have reasons for those choices.”69 I believe that this last argument forms the core of all pro-NIPT
arguments. It is about empowering women by giving them more information about their pregnancy.
Based on this information, women should have the freedom to formulate their own ration reasons to
terminate their pregnancy. But there’s a question that still stands: can just about any reason be
enough to justify selective abortion, just for the sake of acting autonomously?
Selective abortion, or any abortion for that matter, is believed to be done based on personal
reasons in most cases.70 Caring for a child can be very demanding financially and emotionally, let
alone a disabled one. Or, as Buchanan (1996) noted, having a (disabled) child can put some serious
strain on one’s marriage.71 Other reasons may be that there are also a some genetic disorders that go
hand-in-hand with Down’s syndrome that may guarantee the death of an afflicted child by a very
early age.72 Preventing such a child to be born is a choice parents will make to spare themselves the
suffering of bearing a child who will soon die, and spare the child of pain and suffering.73
As I stated earlier in this essay, the reasons upon which we act have to come from ourselves
and not externally if we follow the Kantian framework on autonomy. This is to make sure that
autonomy, when applied to an individual, the source of the authority of the principles that bind her is
indeed in her own will. This conception of autonomy forms the fundamental idea of the Categorical
Imperative, in which it is stated that one must “act in accordance with a maxim of ends that it can be
a universal law for everyone to have”.74 So motives play a large role here as well: you cannot truly act
autonomously if you are externally influenced. ‘externally’ here is a broad term: it refers to influence
from other persons and institutions, but also emotions and self-interest. These are not rational
motives for acting according to Kant.
Apart from wanting to spare the newborn child of pain and suffering, the main reasons to get
selective abortion still seem to be due to personal reasons. While this is an act in which one may
engage due to the right of self-determination, and one can have many legitimate reasons in doing so,
it is also possible that these types of decisions are made in self-interest. This might be a problem
when we want to justify our reasons to perform selective abortion. It is said in Beauchamp &
Childress (2013) that Kant makes a distinction between autonomy and heteronomy.75 If we act from
passion, desire, personal ambition or self-interest, it is said that we act heteronomously instead of
autonomously. The difference between autonomy and heteronomy is that in heteronomy the will is
66
McCoy (2011), “Kantian Moral Philosophy and the Morality of Abortion, forthcoming, p.145
McCoy (2011), “Kantian Moral Philosophy and the Morality of Abortion, forthcoming, p.146
68
Ibid.
69
Feldman (1998), “From Occupied Bodies to Pregnant Persons: How Kantian Ethics Should Treat Pregnancy
and Abortion”, Autonomy and Community: Readings in Contemporary Kantian Social Philosophy, p.270
70
Buchanan (1996), “Choosing who will be disabled: Genetic intervention and the morality of inclusion” Social
Philosophy & Policy, vol.13, no.1, p.32
71
Ibid. p.21
72
Approximately half of children born with Down’s syndrome have serious heart defects. See: Unknown author
(2012), “The Heart & Down’s Syndrome”, National Down Syndrome Society,
http://www.ndss.org/Resources/Health-Care/Associated-Conditions/The-Heart--Down-Syndrome/ (accessed
on 29/05/16)
73
Gonter (2004), The Expressivist Argument, Prenatal Diagnosis, and Selective Abortion: An Appeal to the
Social Construction of Disability”. In: Macalester Journal of Philosophy. Vol. 13, issue 1, article 3, p.8
74
Kant (1797), “Methaphisik der Sitten”, Practical Philosophy, trans. M.J. Gregor (New York: Cambridge
University Press, 1999) 4:403
75
Beauchamp & Childress (2013), Principles of Biomedical Ethics p. 363 - 364
67
11
influenced by other factors than motivation or moral principles.76 So a heteronomous will is in
obedience to rules of action that are external to us. According to Kant, such a will is always
submitting itself to some other end, and the principles of its action will invariable by actions that are
in some way to receive pleasure, appease the moral sense, or seek personal perfection.77
Heteronomous reasons cannot be universalized, as they are too specific to be able to be formulated
into a maxim. Acting heteronomously is therefore not acting from moral duty, but acting from
inclination.78
While this argument is pretty solid in proving that freedom of choice in this matter might not
be that autonomous after all, I do not think that this gives enough reason to oppose to selective
abortion. Yes, the actual reasons for some to terminate their pregnancy might not be moral reasons,
I still believe it is favourable for women to have the possibility to make that decision themselves. As
Feldman stated, this helps making pregnancy less ‘morally passive’ for women, and enables them to
have their own needs and wishes respected. And we have seen that there are justifiable reasons
within the Kantian framework that allow for selective abortion. After the analysis made in this
chapter I feel that once NIPT is offered, women are not breaching any moral duties if they wish to
partake. The objections thus far mentioned from the perspective of disabled people were either not
convincible or not overriding the female autonomy. I feel that the real moral obligation lies with the
state or policymakers, who must decide whether to offer this test for everyone, free of cost. Their
decision will have a lot of influence the other two stakeholders in this case, the people with
aneuploidy and the pregnant women. This brings us to the final chapter of this essay: state influence.
III. State influence
After discussing both the perspectives of the disabled people and the pregnant women, I will
now analyze the role of the policymakers within Dutch health-care system as an institution within
this debate. Or rather, the influence the government has on the issues I have discussed so far.
It is important to keep in mind that NIPT is a medical procedure that is planned to be offered
to every pregnant woman for free via the national health care system. I am emphasizing this because
I have questioned myself whether NIPT would be something that has to be financed by our
healthcare system. The test is not to track fatal diseases, it is mainly used to determine whether the
foetus has aneuploidy. Because in the first place, the main goal of the public health system is to
promote the well-being of the state.79 Perhaps this would apply to the parents that decide to keep
their disabled child so they are able to provide better care for it.
It appears that our health care system is also there to promote informed choice.80 This is
something I did not know; this could justify implementing NIPT into the Dutch healthcare system. On
the governmental website Rijksinstituut voor Volksgezondheid en Milieu, it is stated that “the
screening on Down’s syndrome shows if you have an increased chance of conceiving a child with
Down’s syndrome. With this information you can decide yourself whether to continue the testing. If
you continue testing, you can become more certain you are pregnant of a child with Down’s
syndrome.”81
76
Ibid.
Kemerling (2011), “Kant: The Moral Order”, Philosophy Pages http://www.philosophypages.com/hy/5i.htm
78
McCarty (2016) “Autonomy and Heteronomy”, East Carolina University Department of Philosophy,
http://myweb.ecu.edu/mccartyr/GW/AutonomyAndHeteronomy.asp (accessed on 01/06/16)
79
Gijsen et al.(2014), “Wat is gezondheidszorg?”, Nationaal Kompas Volksgezondheid
http://www.nationaalkompas.nl/zorg/wat-is-gezondheidszorg/ (accessed on 01/06/16)
80
Unknown author (2016), “Waarom een screening?” Rijksinstituut voor
http://www.rivm.nl/Onderwerpen/D/Downscreening/Waarom_een_screening (accessed on 12/05/16)
81
My own translation of: Unknown author (2016), “Waarom een screening?” Rijksinstituut voor
http://www.rivm.nl/Onderwerpen/D/Downscreening/Waarom_een_screening (accessed on 12/05/16)
77
12
Promoting informed choice in health care is part of the pure choice model, in which it is
stated that the enabling of meaningful reproductive choice with regard to parenting or avoiding a
child with a serious disorder or disability is (or should be) the very aim of offering testing for foetal
abnormalities.82 As I have argued before, increasing informed choice improves the autonomy of the
pregnant woman, which makes it easier for the woman to make full use of her reproductive rights. It
is also important to note that the NIPT-diagnosis is made at a very early stage of pregnancy, so there
remains more time for consultancy within the procedure and there is more time to make a decision
about whether or not to terminate the pregnancy.83
By enabling informed decisions, abortion decisions will remain personal instead of being
turned into instruments of societal goals, Wilkinson argues.84 Societal goals such as prevention and
cost-reduction by bringing down the number of people that require a life-long costly care is one of
the main objections against prenatal screening.85 Within the pure choice model, the promoting of
informed choice is recognized as the main purpose and benefit of prenatal screening and it is viewed
that informed choice is what distances the process from eugenics.86 So by implementing NIPT, the
government is aiming at increasing the autonomy of the pregnant woman by providing more
information on her pregnancy and by giving her more options of choice.
After summing up the positive effects it may have if NIPT were to become available for every
woman, I will now discuss some of the more negative consequences NIPT may have on our society
should the government decide to continue with their plan. Improving informed choice and genetic
counselling seems like a very noble goal, but implementing this type of prenatal screening while
knowing that it will result in fewer births of people with Down’s syndrome (the news about
Denmark’s steep decline in children born with Down’s syndrome after implementation of NIPT was
widely debated) is a way of the government influencing our own choice instead of merely increasing
our options of choice. Although it will not be mandatory for pregnant women to participate in NIPT,
due to the fact that it is highly efficient, painless, cheap and easy method, women might feel obliged
to participate. Come and think of it: you only have to get a drop of blood examined, for which you
don’t have to visit a special clinic of some sort. The procedure takes very little time and it will be
covered by basic healthcare insurance. And you can decide for yourself what you want to do with the
prenatal diagnosis after all.
What we might be dealing with after the full implementation of NIPT in the Netherlands is an
anticipated regret of decision-making.87 Women might experience feelings of regret for not deciding
to partake in NIPT, as people tend to trust in the expertise of our healthcare, so logically if a certain
test is being offered by the health-care system people are more likely to assume that it is a good
thing to do. It might even increase the sense of responsibility within the population of pregnant
women. Will it be regarded as irresponsible behaviour if one refrains from taking a prenatal test,
solely because of the fact that it is so quick and easy to take the test? Apart from the possibility of
feeling forced to take the test, it might even go as far as women experiencing societal pressure to get
the foetus removed if it has Down’s syndrome. It can be argued that this is a form of libertarian
paternalism; the state might establish a bias that giving birth to children with aneuploidy is a bad
thing and needs to be prevented.88 It may even become a matter of course to undergo the test,
normalizing the procedure. And when the test becomes normal, the fear exists that both the testing
82
Wilkinson, “Prenatal Screening, Reproductive Choice, and Public Health”, Bioethics. Vol. 26. Number 1. 2015
p.26
83
Vanstone et al.(2013), “Non-Invasive Prenatal Testing: Ethics and Policy Considerations”, in J Obste Gynaecol
Can,vol.36 no.6 p.517
84
Wilkinson (2015), “Prenatal Screening, Reproductive Choice, and Public Health”, Bioethics, vol. 26 no. 1 p.26
85
Ibid.
86
Ibid.
87
Steenhaut et al. (2006), “The Role of Anticipated Guilt in Consumers’ Ethical Decision Making, Journal of
Business Ethics, vol 69: p.270
88
Beauchamp & Childress (2013), Principles of Biomedical Ethics p. 218 - 219
13
and selective abortion will be ‘normalized’, possibly rendering the procedure to a ‘thoughtless act’.89
I think this is actually the main issue at stake here.
Besides looking at what kind of effect this policy it will have on pregnant women individually,
we should also look at it from the perspective of society as a whole. It is important for any procedure
or action that is being funded with collective funds through the government that it can be justified in
terms of fairness and expediency, as every citizen is contributing to this by paying taxes.90 According
to de Jong et al. (2009), if prenatal screening can be made cheaper with NIPT, then that is also a
moral consideration that has to be taken into account.91 Because that way, it will demand less from
society. But this goes both ways, as it also counts for the economic effects of fewer people with
Down’s syndrome. Less people will be needed for this specific type of care, which may result in fewer
jobs in the sector. However, when it is decided that NIPT will indeed be implemented in basic
healthcare for every pregnant woman, this will end all risky procedures that are being used now,
which will result in fewer miscarriages. But it will also result in increased stigmatization for those who
do live with Down’s syndrome as stated in the beginning of this essay, which can be regarded as a
common social risk of prenatal screening.92
It appears that although great things can be done, such as increasing women’s autonomy,
policymakers have to be cautious not to ‘nudge’ people into taking the test, thereby influencing true
autonomous choice.
Conclusion
The main question in this essay was about what the ethical implications are of offering NIPT
for everybody for free through healthcare. With my analysis I hope to contribute to the discussion on
prenatal screening. There appeared to be three main issues at stake: the dignity of people with
aneuploidy, the autonomy of pregnant women, and the influence that the government has on the
former two through policymaking. The foetal moral status was not discussed as I find that that
discussion needs a whole essay on its own.
The first issue that arose was selective abortion: women can now decide whether they want
to give birth to a child with abnormalities or not. Denmark has shown us that in most cases,
prospective parents will actually choose to terminate their pregnancies based on aneuploidy, which
has caused an uproar from disability rights movements. Here I pointed out how the implementation
of NIPT can be discriminating towards people with aneuploidy, as it sends out a negative message
towards people with this disability instead of the disability itself, possibly giving these people the
feeling that it would have been better for them to have never been born at all. This may also be
offensive for these people on a personal level as their identity is often constituted by their disability,
although the severity of this is hard to determine as there is a strong variation of awareness of their
condition between individuals with Down’s syndrome.
It did prove somewhat arbitrary to terminate pregnancies based on the term ‘disabled’ as
this is both a medical as a social construct, comparable to the concepts of ethnicity and gender.
People often fail to realize that people with aneuploidy can lead happy, complex and relatively
independent lives, so they aren’t as helpless as one might think when they use the term ‘disabled’.
Especially when they grow up in a country such as the Netherlands, where there are sufficient means
for people with aneuploidy to live their lives.
89
De Jong et al. (2010), “Non-invasive prenatal testing: ethical issues” European Journal of Human Genetics,
vol.18, p.237
90
De Jong et al. (2009) ,“Prenatale chromosoomdiagnostiek: breed of smal?”, Ned Tijdschr Geneeskd p.3
91
Ibid.
92
Boyle et al.(2003) “An ethical approach to giving couples information about their fetus” Human Reprod;
18:2253-6
14
Another problem is that a steep decline in newborns with Down’s syndrome might even
weaken the effort to increase the quality of life for people that live with this condition, which is
called the loss of support objection, which could actually make people with aneuploidy more disabled
than they are now.
Contrary to this we have seen several ways of how the woman’s autonomy is not being taken
in consideration as much as it should be, and that the NIPT test is essentially there to increase
informed choice which leads to an increase in autonomy for women. Increasing informed choice is
also one of the main goals of the health care system.
The case of selective abortion might also be justified due to the fact that it is not necessarily
true that the obligation to refrain from harming others in this case overrides the reproductive
autonomy of the pregnant woman. It does not necessarily entail that the former has a higher moral
value than the latter. And apart from that, one can also consistently find that her foetus should be
aborted because of a disability, and also that people who live with disabilities should be treated with
proper care.
Women are also not forced into taking the test or getting an abortion based on prenatal test
results; they can also use this newly gained information to prepare for parenthood of a disabled
child. This would make prospected parents much better prepared to offer their newborn child the
care it needs.
Despite the fact that the motives for selective abortion are often out of self interest and thus
lack moral value, there are morally justifiable reasons to perform selective abortion. People with
Down’s syndrome lack the mental capacity to be able to live autonomous lives in the Kantian sense,
so it would be unfavourable to put someone on this earth that can never be fully autonomous. But
even when this is not the motive of selective abortion in most cases, what I find most important is
that women actually have the possibility to decide this for themselves, even if some motives are
heteronomous instead of autonomous. I feel that the real issue lies with the government, as they
might be influencing the free will of women by establishing a bias that aneuploidy is a bad thing.
Because the state policy influences the choices pregnant women will get, I find that the real
moral obligation lies not so much with the pregnant women. They are using their right to selfdetermination and the means offered by the state to make their own decisions, which makes it
justified. The objection here lies with the state, as they are aware of what kind of consequences the
full implementation may have, and there is a chance that by making it so easily available, women
feel obliged to take the test instead of participating out of autonomous choice. The true challenge of
the debate lies with the policy-makers, who have to figure out how to offer the test without
establishing the bias that aneuploidy is something that should be prevented. This could be subject of
another research paper. I believe that with the right policy, NIPT can be of great use to strengthen
the autonomy of pregnant women.
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18