detect fetal abnormalities has become routine. The amount
of genetic information that has become available through
such testing has expanded enormously within the past few
years. There are a number of ways of carrying out these
tests, yet for each of them there is a danger of inaccurate
results, and for some of them there is the additional hazard
of injury to the fetus. Pregnant women and their partners
are often unprepared for the news that they are carrying a
“defective” fetus. An abortion agreed to in haste and under
coercive pressure, can have devastating consequences, not
only for the parents, but for other children. Is enough being
done to inform women about the implications of prenatal
testing, and to provide them with alternative choices to
abortion when tests prove positive?
* We are indebted to Dr Bridget Campion for her invaluable help in
preparing this chapter.
Abortion after Prenatal Testing *
Selective or genetic abortions are undertaken not because
the pregnancy itself is unwanted but because some fetal
attribute discovered through prenatal diagnosis has made the
particular fetus unwanted. According to one study, “as many
as four out of every 1000 recognized pregnancies are termi-
nated in the second trimester for fetal abnormality”
Prenatal diagnosis is increasingly seen as a routine part of
prenatal care, although it seems rarely to be linked explicitly
to abortion, at least in the minds of pregnant women and
their partners. Yet an abortion following the detection of a
fetal anomaly can be devastating for all concerned.
Additionally, even the diagnostic tests carry risks to fetal
well-being quite apart from abortion.
Over the past two decades, little emphasis has been placed
on the psychological outcome for women who abort a child
owing to genetic disorders following prenatal diagnosis. But
one significant change in the past decade has been the
growing amount of available genetic information about indi-
vidual fetuses. This information increases the likelihood that
a woman will opt for abortion, perhaps at a late stage in her
Since the early 1980s,
has been used to diag-
nose chromosomal anomalies such as Down Syndrome or
Tay-Sach’s disease after the sixteenth week of pregnancy.
The introduction of ultrasonography has also allowed physi-
cians to identify the presence of neural tube defects (spina
In the mid 1990s, the application of the technique of
has led to further advances in early
Women’s Health after Abortion: The Medical and Psychological Evidence
Chapter 12 07/02/02 19:48 Page 2
ical conditions such as cystic fibrosis and late or adult-onset
diseases such as Huntington's Chorea or multiple sclerosis.
Further, it is now possible to test for what is known as
“genetic susceptibility” or predisposition for conditions such
as breast cancer or Alzheimer’s disease.
There are four types of prenatal diagnosis commonly offered
1. Ultrasonography (“ultrasound”):
Through the use of sound waves, ultrasound provides a
visual picture of the developing fetus. It is a test used to
detect anomalies that are physically distinctive – defects of
limbs and internal defects of the abdomen, chest, and heart.
Neural tube defects, such as anencephaly, can also be diag-
nosed quite reliably by the fourteenth to sixteenth week of
pregnancy. Ultrasound may also be used to confirm the
presence of more that one fetus in the womb or measure the
progress of fetal growth.
Raised alpha fetoprotein levels in the pregnant woman’s
blood may mean that the fetus has a neural tube defect. The
test is usually done in the fifteenth to seventeenth week of
gestation with results available up to two weeks later.
Because MSAFP has a high ratio of false-positives,
the test is
firm the presence of an anomaly in the fetus.
Amniocentesis normally involves inserting a needle into the
uterus through the abdomen and withdrawing fluid. This
may be a therapeutic intervention, as when a pregnant
woman suffers from polyhydramnios – that is, an excess of
amniotic fluid. For diagnostic purposes, however, amniotic
fluid is withdrawn in order to test for the presence of
chromosomal abnormalities or neural tube defects in the
fetus. Amniocentesis is usually performed at sixteen to
Abortion after Prenatal Testing
Chapter 12 07/02/02 19:48 Page 3
to four weeks later. The risk of miscarriage with amniocen-
tesis, while small (one per cent), is nevertheless real.
In this relatively new procedure, the villi are used to provide
chromosomal information about the fetus. The test can be
done in the first trimester, with the results available within
one or two days. However, because placental rather than
fetal material is used, CVS is not as accurate as amniocen-
tesis. Because it is performed so early, it cannot be used to
detect anomalies that develop later in the pregnancy
(e.g. neural tube defects). CVS carries with it a 3.2 per cent
risk of miscarriage
and the danger of “limb reduction” in the
babies nevertheless had damage to their limbs; in another
study of 289 pregnancies, five fetuses were similarly affected.
These deformities were attributed to CVS.
detection of fetal anomalies which allows for the early termi-
nation of those pregnancies.
Parents Unprepared for Diagnosis
There appears to be dissonance between the practitioner’s
understanding of the purpose of prenatal diagnosis and the
pregnant woman’s perception of the procedure. While the
practitioner may offer or even insist on the diagnostic tests
as a way of preventing the birth of a “defective” child, preg-
nant women seek them out for reassurance that their babies
are well and healthy.
For many expectant couples, the link
This may be in part because genetic counselors do not
make this link explicit to their clients. In her study of the
effects of prenatal diagnosis on the dynamics of pregnancy,
Barbara Katz Rothman found that, while genetic counselors
might presume that selective abortion would follow the
detection of an anomaly, rarely did they offer any informa-
tion about actual abortion procedures. Indeed, some did not
even include a discussion of abortion in the first counseling
Chapter 12 07/02/02 19:48 Page 4
Even when birth defects and abortions are explicitly
faced with the reality, react as though they were hearing for
the first time that birth defects can occur.”
Despite the shock and grief they may experience upon hear-
ing the news of a fetal anomaly, the pregnant woman and
her partner are usually urged to make the decision to termi-
Behind this urgency is the physician’s desire
Because of the delays involved in amniocentesis, abortions
may occur in the second and even third trimesters of preg-
nancy. In health care settings, the issue of such late abor-
tions has raised ethical and legal questions.
In one early
the woman receiving the news of the abnormality.
informed about parenting children born with that anomaly
and thus consider carrying through with the pregnancy.
Methods of Termination
The method of termination chosen will depend on the stage
of pregnancy. CVS, with its results available in the first
trimester, may be followed by dilation and curettage, the
type of abortion normally done at an early stage of pregnan-
Later terminations following amniocentesis may be
carried out by dilation and evacuation or by the instillation
of urea or saline into the uterus, to kill the fetus and initiate
While D&E may be relatively fast and physically
makes post-mortem examination almost impossible. Similarly,
instillation procedures that kill the fetus make fetal tissue
unsuitable for later examination.
This type of abortion may
late termination of pregnancy have labor induced through
the use of prostaglandins.
It is a procedure that has the
baby suitable for post-mortem examination.
Abortion after Prenatal Testing
procedure carries the possibility of delivering the baby alive,
normally not a desired outcome.
The labor itself can be
but because of a desire not to interfere
According to one study, “virtually all of the women experi-
painful, or frightened.”
Sequelae of Genetic Termination of Pregnancy
While couples may not be completely aware of the physical
aspects of genetic abortions, they usually know even less
about the accompanying and subsequent psychological and
emotional distress of the procedure.
In interviews conduct-
found the pregnancy termi-
nation to be a traumatic experience.
Rayburn and Laferla
cy because of a major fetal malformation is often a shattering
experience, and time for adjustment may be prolonged.”
This is true for both “early” as well and “late” genetic abor-
Indeed, there may be instances in which an early
One study subject reported this to be so because “there was
no fetus to see and hold” after an early termination.
trimester prenatal diagnosis and selective [genetic] abortion
may actually increase the unresolved ‘disenfranchised’ grief
since so few people know about the person’s loss.”
Researchers offer various explanations for this phenomenon.
alies were pregnancies in which maternal attachment had
even as women may have hoped to avoid such
Many of the women choosing or urged to
speculate, the pregnancy may have been seen to be one of a
declining number of opportunities to have a child.
the woman chooses or consents to it. According to Kolker
and Burke, “genetic abortions are especially poignant
Chapter 12 07/02/02 19:48 Page 6
Blumberg and colleagues speculate that “Perhaps
the role of decision making and the responsibility associated
with selective abortion explains [sic] the more serious
depression following [the abortion].”
Whatever the reason,
prepared...for the extent of the psychological trauma experi-
enced after a selective [genetic] abortion.”
weeks to recover physically; emotional scars are raw two
Grief, Guilt, Depression
The extent and intensity of grief can be a surprise to many
Iles and Gath found that nearly one half of the
women in their study had symptoms of grief six months after
the abortion and almost one third continued to grieve
thirteen months after the termination.
Seller and colleagues
reactions, often commensurate with those experienced over
the loss of a spouse, parent, or a child.”
colleagues found that neither the method of termination nor
the type of anomaly seems to have affected the intensity of
grief, and Kolker and Burke found that women grieved
abortions following both CVS and amniocentesis.
ing ultrasound and maternal serum alpha fetoprotein testing,
there was “more confusion, numbness and subsequently
more prolonged grief reactions....” They suggest that, with
these “relatively non-invasive procedures...less thought is
usually given by the women to preparation for an abnormal
the normal but difficult symptoms of grief, such as psychoso-
matic disturbances, guilt and anger, as well as the symptoms
characteristic of an abruptly ended pregnancy in which the
fetus dies – distress upon seeing pregnant women or new-
born babies, continuing to feel pregnant, and experiencing
more pronounced stress around the due date and anniver-
Recovery can take a very long time
and, because of
nied or complicated by other factors.
tion. In one study, this was the case for one-third of sub-
In another, researchers found that, more than a year
nated their pregnancies for fetal indications continued to feel
guilt and anger.
Following a genetic abortion, the guilt and shame may be
elicited by the fact of the fetal anomaly. Parents may feel
that they are to blame for their child’s imperfection.
this way in one study.
In another study, 43 per cent of the
On the other hand, there is the guilt generated by having
men” felt this way.
One researcher found that many women
and will tell relatives and friends that they had suffered a
A very common form of psychological disturbance following
Taking into account some
colleagues speculate that “the actual incidence of depression
following selective abortion may be as high as 92 per cent
among women and as high as 82 per cent among the men
In another study, researchers found that, six
suffered from depression and anxiety and that ten of 48
women were receiving psychiatric treatment.
were simply relieved not to be giving birth to or raising a
child with an anomaly.
According to Donnai and col-
wanted pregnancy after prenatal diagnosis constitute a high
risk group, vulnerable to depression and social disruption.”
Chapter 12 07/02/02 19:48 Page 8
The assumption of many researchers is that genetic abortions
are the terminations of planned or “wanted” pregnancies.
this respect, researchers contend that genetic abortions differ
from elective terminations of pregnancy.
sion that often follow genetic abortions occur precisely
because the pregnancy was planned and “wanted”.
and stillbirths insofar as they evoke grief and depression
arising from the loss of an anticipated and hoped-for baby.
The sequelae following genetic terminations of pregnancy
first, that not every pregnancy terminated because of fetal
indications is a “wanted” or planned pregnancy. In the study
by Iles and Gath, 23 per cent of pregnancies aborted for
genetic reasons were unplanned as were 27 per cent of the
pregnancies in the White-Van Mourik study. As well, two per
cent of women remained “ambiguous” about their pregnan-
cies in the latter study.
Second, and more importantly, research indicates that grief
planned and “wanted” pregnancies.
The “ambiguous” sub-
the intervention two years after the event.”
Similarly, work by Brown links
be terminations of “wanted” pregnancies.
While grief and depression often follow genetic terminations
and simply to the “wantedness” of the pregnancy.
The decision to abort for genetic reasons can have a nega-
tive impact on living children. Although it is not often con-
sidered a factor in the initial decision-making process, the
children in a family. Children are affected by the anxiety of
parents over the abortion and react to the absence of the
baby (whose presence they will have been aware of from
the third or fourth month of pregnancy).
Furlong and Black studied the impact of genetic abortion on
families and found that even very young children react to
their parents’ distress and may have difficulty understanding
and coping with the outcome. They show that young child-
ren are unable to deal with the complexity of the decision.
In the presence of prenatal life, young children do not sepa-
conceptual difference between the two is a medical and
social construct of adults and is not easily understood by
children whose approach to the world is concrete.
The couples who participated in the Furlong and Black
research adopted one of three approaches in explaining the
abortion to their children. The first was a partial explanation
that avoided discussing the role of their own choice. The
children who received such an explanation expressed sad-
ness, disappointment, and guilt and one child wrote an essay
on the event as the worst thing that had ever happened to
him. Parents of very young children chose to give no expla-
nation and yet observed behavioral changes such as motor
regression in their children. Those parents who chose the
third option – to give a complete explanation – did not find
that it solved the problem. Rather, they reported marked and
disturbing reactions. Garton reports that “Abortion can pro-
duce a deep, subtle (and often permanent) fracture of the
trusting relationship that once existed between a child and
Looking at this problem from a psychodynamic
perspective, Ney and Peeters have identified a number of
“post-abortion survivor syndromes”. They conclude that:
“There are terrible conflicts that arise from these situations,
and these have an impact on the individual and society.”
Public Opinion versus Medical Opinion
At present, in the general population, there appears to be a
gap between acceptance of testing for disorders and accep-
tance of abortion of the affected fetus. When a similar group
of Canadian adolescents was presented with already com-
Women’s Health after Abortion: The Medical and Psychological Evidence
Standing found that “females are consistently more opposed
to abortion than are males and both sexes show a consider-
able opposition to abortion in absolute terms”.
positive attitudes towards termination of pregnancy for a
fetal abnormality than do lay groups.”
Under the present
services” rather than responding to a perceived need.
Prenatal diagnosis, already accepted as part of obstetrical
care, is expanding to include many conditions, disorders,
and personality traits. With these new opportunities for
aborting affected pregnancies come issues about informed
consent and possible social coercion to abort.
As noted, health professionals are more in favor of abortion
for genetic reasons than the general public. If women
choose to abort as a result of medical pressure then the
decision will be conflicted and a violation of their personal
autonomy. Indeed, Feitshans raises issues of autonomy and
informed consent and also asks: “Does genetic testing of a
foetus empower women or pose an unanticipated threat to
autonomy? To address these issues there is a need to articu-
late a feminist perspective on genetic testing and possibly to
legislate protection for women’s rights during prenatal
Furthermore there is a negative presumption in the
medical milieu regarding children with these conditions.
There is an imbalance of information, with little provided
that is favorable to children with special needs.
Generally speaking, practitioners must have the patient’s
consent before undertaking any treatment. To make an
informed choice, the patient must have the pertinent infor-
mation, including the benefits and risks of the treatment,
explained in a way that can be understood by her; she must
be deemed competent to make this particular decision; and
the choice must be voluntary. Given current practices, there
is some question as to whether the criteria for informed
choice are met when women choose genetic abortions.
As Kolker and Burke note, “To make a truly informed deci-
sion, clients need to be aware not only of the risk of miscar-
riage entailed in the two procedures [CVS and amniocentesis]
but also of the consequences of the abortion experience. Yet
counselors rarely discuss this prior to the test and the diag-
While genetic counselors may simply assume that
Kolker and Burke point out that ignorance may in fact
underlie clients’ tendency to ask few questions about genetic
terminations of pregnancy. Because clients do not make a
ready link between prenatal diagnosis and abortion, because
they have little or no knowledge of the procedures or of the
aftermath, they do not know what they should be asking.
This ignorance is an obstacle to informed choice.
only information that is needed. “We had only one isolated
piece of information, not a whole crystal ball. How were we
to know what would be best?”
Additionally, there appears
of parenting a child with a given condition.
A further obstacle to informed choice is the state in which
parents find themselves upon learning of the fetal anomaly.
Most are in shock initially and, as Brown writes, “a person
reeling from shock, numbed by a sudden catastrophe,
Nevertheless, patients are urged to make
recovered from the shock. In a study undertaken by White-
Van Mourik, 21 per cent of the study participants agreed to
an abortion even as they had uncertainty about the decision
because they were experiencing numbness and shock. In
their cases, “the decision was made about an event which
Genetic abortions involve two separate but related choices:
prenatal testing and abortion. A study presented at the
American Society of Human Genetics in 1997 found that
per cent of obstetricians did not mention to their patients that
Chapter 12 07/02/02 19:48 Page 12
. The National Institutes for
Health (NIH) note: “Care should be taken to ensure that the
decision to have testing is completely voluntary.”
Despite current emphasis on the principle of respect for
studies suggest that, for many women, there was not always
a sense of having had a choice in the matter. Jones and
colleagues found that, for 93 per cent of the women studied,
the genetic termination of pregnancy was something that
simply had to be done.
The pressure to abort can be
non-directive in their sessions, many nevertheless believe in
the efficacy of genetic terminations of pregnancy.
not to continue the pregnancy in which a fetal defect has
been found before undertaking the amniocentesis.
Coercion is not only an obstacle to informed choice but is a
Chapters 11 and 15.)
Prenatal testing is expanding rapidly, as ever more genetic
markers are discovered and women are urged to undergo
these tests. It seems that there can be enormous pressures
applied to mothers to go through with terminations if an
anomaly is found.
Couples are not prepared for the
usually informed about the help that is available for raising
children with special needs. For an informed choice to be
truly available pregnant women and their partners need to
be told about the possible impact of abortion on them and
their other children, and they also need to have information
about the care of children with special needs.
Chapter 12 07/02/02 19:48 Page 13
• Prenatal diagnosis is increasingly seen as a routine part
of prenatal care, yet in the minds of pregnant women and
their partners it is rarely linked explicitly to abortion.
• The growing amount of available genetic information
about individual fetuses over the past decade has increased
the likelihood that a woman will opt for abortion, perhaps at
a late stage in her pregnancy.
• When testing reveals a fetal anomaly the pregnant
woman and her partner are usually urged to make the
decision to terminate quickly.
• Terminating a pregnancy because of a major fetal
malformation is often a shattering experience for women.
The grief, guilt, and depression experienced after a genetic
abortion can come as a complete surprise to many couples.
• These negative experiences occur whether the pregnancy
has been planned or unplanned.
• The decision to abort for genetic reasons can also have a
negative impact on living children.
• Positive information needs to be given about the choice
of parenting a child with special needs resulting from physi-
cal or mental handicaps.
Chapter 12 07/02/02 19:48 Page 14
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73 “Brown” 1989. See n. 24, p. 2735.
74 “Brown” 1989. See n. 24, p. 2735.
75 White-Van Mourik, 1992. See n. 23, p 64.
76 Genetic testing for cystic fibrosis. National Institutes of Health
Consensus Development Conference Statement on Genetic Testing for
Cystic Fibrosis. Archives of Internal Medicine 1999 July 26;159(14):1529-39,
77 Jones et al. 1984. See n. 9, p. 253.
78 Rothman 1994. See n. 8, pp. 46-7.
79 Green 1995. See n. 6, p. 228.
Mander 1994. See n. 6, p. 44.
80 Mander 1994. See n. 6, p. 45.
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