doi: 10.1111/hex.

12200

Factors that affect the decision to undergo

amniocentesis in women with normal Down
syndrome screening results: it is all about the age
Julia Grinshpun-Cohen MSc,* Talya Miron-Shatz PhD, Liat Ries-Levavi PhD
and Elon Pras MD**
*Doctoral Candidate, Laboratory Manager, **Head, The Danek Gertner Institute of Human Genetics, Sheba Medical Center,
Tel Hashomer, Doctoral Candidate, Associate Professor, Sakler Faculty of Medicine, Tel Aviv University, Tel Aviv, Associ-
ate Professor, Center for Medical Decision Making, Ono Academic College, Kiryat Ono, Israel and Senior Fellow, Center for
Medicine in the Public Interest, New York, NY, USA

Correspondence
Julia Grinshpun-Cohen
The Danek Gertner Institute of Human
Genetics Sheba Medical Center
Tel Hashomer, Ramat Gan, 52621
Israel
E-mail: juliagr1@post.tau.ac.il
Accepted for publication
31 March 2014
Keywords: advanced maternal age,
amniocentesis, decision making,
Down syndrome, screening, statistical
risk estimates
Abstract
Background Risk for foetal Down syndrome (DS) increases as
maternal age increases. Non-invasive screening (maternal serum
triple test) for DS is routinely oered to pregnant women to pro-
vide risk estimates and suggest invasive amniocentesis for denitive
pre-natal diagnosis to high-risk women.
Objective We examined womens decision process with regard to
pre-natal screening, and specically, the degree to which they take
into account triple serum screening results when considering
whether or not to undergo amniocentesis.
Design Semi-structured phone interviews were conducted to assess
recall of DS screening results, understanding of risk estimates and
their eect on womens decision whether to undergo amniocente-
sis. The study included 60 pregnant Israeli women (half younger
than 35 and half advanced maternal age AMA), with normal DS
screening results and no known ultrasound abnormalities.
Results Age appeared to determine the decision process. The vast
majority of AMA women had amniocentesis, many of them before
receiving their DS screening results. Most AMA participants knew
that their risk estimate was normal, but still considered themselves
at high risk due to their age. Procedure-related risk (miscarriage)
and other factors only had a minor eect on their decision. A minor-
ity of younger women had amniocentesis. Younger women men-
tioned procedure-related risk and having normal screening results as
the main factors aecting their decision not to have amniocentesis.
Conclusion Age 35 is an anchor for the pre-determination regard-
ing performing or avoiding amniocentesis. AMA women mention
age as their main reason to have amniocentesis and considered it
an independent risk factor.

2306 2014 John Wiley & Sons Ltd

Health Expectations, 18, pp.23062317
 Age is the main factor affecting amniocentesis uptake, J Grinshpun-Cohen et al.
Introduction
Statistical risk estimates are important in vari-
ous life situations. They also comprise a major
component of the genetic counselling process
which integrates the interpretation of family
and medical histories to assess the chance of
disease occurrence or recurrence.1
As genetic counsellors strive to provide pre-
cise information and assist in the decision-
making process of the counselees, an eort is
made to provide the most accurate numerical
risk estimates, under the premise that this
information is a signicant factor in the nal
decision. Yet, several studies have shown that
risk information is interpreted by counselees in
a personal manner and that their decisions are
related to their subjective perceptions of risks
rather than the objective risk.24 People have
a diculty interpreting risk estimates, espe-
cially when the magnitude of the risk is small.5
Probabilities, by their very nature, involve an
element of uncertainty, yet people tend to
interpret them in a binary or in a more abso-
lute manner as if something will either happen
or not happen.6 Further, work on patients
recall of their own risk estimates has demon-
strated that patients are often inaccurate and
that individuals coming from families with a
history of a disease tend to believe they are in
greater risk than was assigned to them by the
doctor, based on their genetics.7
The risk for foetal Down syndrome (DS)
increases with the increase in maternal age,
from 1 : 1600 at age 20 to 1 : 30 at age 45. At
age 35, the risk is approximately 1 : 350.8
Non-invasive screening (maternal serum triple
test) for DS is routinely oered to pregnant
women with the purpose of providing risk esti-
mates and oering invasive pre-natal diagnosis
(usually amniocentesis) to appropriate sub-
groups of women considered to be at higher
risk. Screening for DS risk, performed by anal-
ysing markers in maternal serum, is recom-
mended to every pregnant woman in the US,
Israel and many European countries. The main
goal of the test is to assess the risk of foetal
DS,9 which should inform the decision whether
2014 John Wiley & Sons Ltd
Health Expectations, 18, pp.23062317
2307
or not to undergo amniocentesis that provides
a denitive diagnosis for DS. Risk assessment
is based on measuring the amount of several
chemicals in the mothers blood and a statisti-
cal model calculating the risk given her age at
the end of pregnancy. Risk gures are usually
presented in a probabilistic 1 : XXX format
with a range of 1 : 11 : 20 000. A cut-o is
used to distinguish normal (low-risk) from
abnormal (high-risk) results. In Israel, where
the present study took place, the Ministry of
Health sets the cut-o at 1 : 380 so that if the
result indicates a higher risk, amniocentesis is
recommended and funded.10,11 Additionally,
when the woman is advanced maternal age
(AMA) or if various ultrasound abnormalities
are detected, amniocentesis is government
funded regardless of the screening test results.12
In Israel, all women who undergo the screening
for DS receive the test result that states the
basic risk of DS due to age alone and the
adjusted risk according to the test. It is widely
believed by geneticists and genetic counsellors
that this information facilitates the decision of
whether amniocentesis should be per-
formed.13,14 However, Lawson found that neg-
ative perceptions of having a child with DS
had a more signicant inuence on decisions
made than the numeric probability for the out-
come.15
Compared with other western countries,
Israeli women tend to perform many tests dur-
ing pregnancy16 including genetic carrier
screening, ultrasound scans and biochemical
screening for DS. Based on the latest survey of
the Israeli Ministry of Health, 64% of preg-
nant Jewish AMA women had triple test
screening and 47% had amniocentesis.17 Of
Jewish women younger than 35, 61% had the
triple test screening and 10% had amniocente-
sis. Israeli Jewish population is very diverse
with regard to religiosity. One of the main fac-
tors aecting the decision regarding amniocen-
tesis is religiosity probably as religious women
do not accept the option of pregnancy termina-
tion for a foetus with DS. Among secular
Jewish women of all ages, 89% had triple test
screening and 32% had amniocentesis. Secular
2308 Age is the main factor affecting amniocentesis uptake, J Grinshpun-Cohen et al.
women over 35 were 4.8 times more likely to
have amniocentesis than ultraorthodox women.
Amniocentesis is associated with a risk of
miscarriage. The exact magnitude of this risk is
cited dierently in dierent places, ranging
from 1 : 100 to 1 : 1600,1820 although in the
ocial Israeli consent form that is used in all
medical facilities, the risk is stated as 1 : 200.
Thus, the decision to perform the procedure
without a medical indication can lead to signi-
cant negative consequences.
A question that arises in this context is what
factors aect the decision regarding the screen-
ing test and amniocentesis. A study performed
in Israel found that the use of amniocentesis
by low-risk women was associated with older
age, having more information and being under
more social pressure.21 In a study carried out
before screening for DS was available, French
et al.22 found that in a sample of highly edu-
cated women, there was no relationship
between knowledge and the decision to obtain
amniocentesis. It was previously noted that
decision by AMA patients regarding amniocen-
tesis may not always correlate clinically with
DS screening results.23 Researchers have found
that screening for DS decreased amniocentesis
uptake among AMA women.24,25 Johnson
et al.26 found that AMA women were more
likely to undergo amniocentesis when their
screening-based risk was higher than their age-
related risk, while Vergani et al.27 indicated
that the key determinant of the choice regard-
ing amniocentesis in AMA women was the a
priori opinion of the woman towards the pro-
cedure.
The main objective of this study was to
examine both comprehension and use of
numeric risk information in medical decision
making. We investigated the understanding
and recall of the DS screening results and the
way this information aected the decision to
undergo amniocentesis with a special emphasis
on age as a factor in the decision. Specically,
we examined whether women understand the
statistical risk estimates of DS screening tests
as well as the risk associated with amniocente-
sis and whether they use this information in
conjunction with other factors, when making
their decision about amniocentesis.
Methods
Approval for this research was obtained from
the Sheba Medical Center medical ethics com-
mittee. Names and phone numbers of women
who had normal (low-risk) results of second
trimester triple test screening performed at the
Genetic Institute of the Sheba Medical Center
were obtained. A written explanation about the
research and a possible future phone interview
was sent by mail to all prospective partici-
pants.
Women who had medical indications for
amniocentesis (ultrasound ndings, family his-
tory of DS or high statistical risk estimate on
rst trimester screening) were excluded from
the sample. We also excluded those who did
not speak uent Hebrew. Approximately,
2 months after they received their screening
results, women were contacted by phone and
asked for their consent to participate in the
semi-structured interview. The interview was
conducted after the decision regarding amnio-
centesis was reached, so as not to inuence the
womans decision. There were a total of 311
eligible participants during the research period.
To reach the pre-determined number of 60
participants, women were randomly selected,
and at least one attempt to call each one of
them was made, until the desired sample size
of 60 was reached. Six women among the 74
that were reached by phone on the rst
attempt refused to participate. The main rea-
son was time constrains due to the uninter-
rupted time slot required to complete the
interview.
Eight additional women were later excluded
due to medical indications for amniocentesis,
which were revealed in the interview. This
places the response rate to our study at 81%.
Sample size was calculated as to compare the
proportion of women in the below- and above-
AMA groups, respectively, on proportion that
undergo amniocentesis (yes/no). A sample of
30 in each group would be enough to detect a
2014 John Wiley & Sons Ltd
Health Expectations, 18, pp.23062317
 Age is the main factor affecting amniocentesis uptake, J Grinshpun-Cohen et al.
large eect at power of 0.80 (P < 0.05, 2-
tailed).28
After verbal consent was obtained, a phone
interview that lasted 11.81 min on average
(with a standard deviation of 4.14 min) was
conducted. All women were interviewed by a
single interviewer (JGC). Overall, 60 women
were interviewed: 30 were under the age of 35
and 30 were over 35, thus considered AMA for
government funding purposes. Of the 60 inter-
views, 52 were recorded and transcribed. The
remaining eight were analysed based on the
questionnaire lled during the phone conversa-
tion. All 60 participants were Jewish. Forty-
four (73.3%) described themselves as secular, 9
(15%) as traditional and 4 (6.6%) as religious.
Three women did not answer the question
regarding religious beliefs. With regard to edu-
cation, 15 (25%) had high school education, 25
(41.6%) had an academic degree, and 18
(30%) had a masters or doctoral (MD or PhD)
degree. Two women did not answer the ques-
tion regarding education level.
Questions included assessment of:
1. Knowledge and recall of screening test (tri-
ple test) purpose, amniocentesis risk, thresh-
old for abnormal results and own risk
estimate.
2. Understanding of screening results.
3. Whether or not amniocentesis was per-
formed.
4. The reasons for performing or declining
amniocentesis, especially the eect of mater-
nal age, family history, and available public
funding.
The questionnaire is presented as Data S1.
Statistical analysis was performed using SPSS
v19.
Table 1 Age, risk and amniocentesis performance: participants characteristics with regards to age, risk estimate and
amniocentesis performance are presented
Sample Young
Sample size 30
Average age 29.1 (2335)
Average risk 1 : 10 866 (1 : 5901 : 20 000)
Had amniocentesis (rate) (%) 2 (6.6)
AMA, advanced maternal age.
2014 John Wiley & Sons Ltd
Health Expectations, 18, pp.23062317
2309
Results
The decision of the patients regarding amnio-
centesis is presented in Table 1. While the vast
majority of AMA women (86.7%) had amnio-
centesis, only a small minority of younger
women (6.6%) chose to undergo the procedure.
The Pearsons correlation between age (as a
continuous variable) and performing amniocen-
tesis is 0.768 (P < 0.001).
The average risk of the 28 women who had
amniocentesis was 1 : 5753, vs. 1 : 9888 for the
32 women who did not have the test. Even
though this is a statistically signicant dier-
ence (P < 0.05), both risks are in the normal
range and are much lower than the 1 : 380 cut-
o for high-risk results (P < 0.01). The Pear-
sons correlation between risk at the DS screen-
ing test (as a continuous variable) and
performing amniocentesis is 0.278 (P < 0.05).
When controlling for risk, the correlation
between age and amniocentesis (r = 0.747) is
still highly signicant (P < 0.01). However,
when controlling for age, there is no signicant
correlation (r = 0.074) between the risk esti-
mates and amniocentesis. The above correla-
tions were calculated for the entire sample,
regardless of whether or not the woman waited
for the triple serum screening results before
deciding on an amniocentesis. About a third of
the women (17) did not wait to receive the
screening test result before deciding on an
amniocentesis (see Fig. 1). When only the 43
women who had waited for screening result
(see below) were included, the signicance of
the above correlations did not change (correla-
tion for age and amniocentesis controlled for
risk of 0.642, P < 0.01).
AMA All
30 60
37.6 (3542) 33.4
1 : 5050 (1 : 4101 : 20 000) 1 : 7958
26 (86.7) 28 (46.7)
2310 Age is the main factor affecting amniocentesis uptake, J Grinshpun-Cohen et al.

(a) (b)

Figure 1 Flow chart representing

whether women waited for screening
results before deciding on
amniocentesis performance among
advanced maternal age (a) and Young
(b) women.

The Pearsons correlation between education
level (a scale of 1 = high school to 4 = PhD or
MD) and amniocentesis performance is 0.362 (P
value 0.05). However, when controlled for age,
the very small remaining correlation ( 0.026) is
negative and not statistically signicant.
Within the AMA group, the correlation
between education and amniocentesis uptake
(0.118) is not signicant and is lost when con-
trolled for age.
The correlation between education level and
recall of screening results was 0.059 (P value
0.05). Thus, education hardly aected recall.
The correlation between religiosity (on a scale
of 1 = secular to 4 = orthodox) and amniocen-
tesis performance is 0.265 (P value 0.05).
When controlling for age, this correlation
remains similar ( 0.236), but is no longer statis-
tically signicant. In any case, of our partici-
pants, only four dened themselves as religious
(score of 3).
Among the 43 women who had the statistical
results at the time of the decision regarding
amniocentesis, only 17 (40%) said that they
received an explanation about the triple test by
a medical practitioner (doctor or nurse) before
having it. Thus, the majority of women either
did not have the test results at their disposal
while deciding on amniocentesis or did not
have an explanation regarding the purpose of
triple serum screening and its role in determin-
ing whether to have amniocentesis.
Is the decision affected by accurate recall of
risk estimates?
At the time of interview, participants were
asked to recall the risk estimates for DS and for
amniocentesis-related miscarriage. By that time,
all women had received their screening results
(thus had the necessary information to answer)
and had reached their nal decision regarding
amniocentesis. The results presented in Table 2
show that while a relatively small fraction of
women could accurately recall the risk estimates
for DS and amniocentesis-related miscarriage,
more women who had amniocentesis accurately
recalled the procedure-related risk, while more
women who did not have amniocentesis accu-
rately recalled their screening results.

Table 2 Recall of risk estimates and amniocentesis performance: patients (who did, or did not, have amniocentesis) recall of
both Down syndrome (DS) screening risk based on their screening results and amniocentesis-related miscarriage risk
(1 : 200)

Did not
Had have
amniocentesis amniocentesis
(28) (32) All (60)

Can accurately* quote screening result (%) 3 (11) 13 (41) 16 (27)

Recalls result as normal (%) 28 (100) 32 (100) 60 (100)
Can accurately* quote amniocentesis-related risk (%) 12 (43) 6 (19) 18 (30)
Can accurately* quote both the screening result and amniocentesis risk 3 (11) 6 (19) 9 (15)
(%)
Cannot accurately quote either risk (%) 10 (36) 18 (56) 28 (47)

*Among those that could quote any number at all, a response within a 10% range from the actual risk estimate was accepted as accurate.

2014 John Wiley & Sons Ltd

Health Expectations, 18, pp.23062317
 Age is the main factor affecting amniocentesis uptake, J Grinshpun-Cohen et al.
For almost a third of the participants (17),
the issue of whether the screening results
aected their amniocentesis decision was irrel-
evant as they had amniocentesis before
receiving their screening results. This means
that the screening results could not have been
taken into account when deciding on amnio-
centesis.
As shown in Table 2, ve of the 28 women
who had amniocentesis (18%) quoted proce-
dure-related risk as 1 : 1000. This risk estimate
is mentioned during counselling at the Sheba
Medical Center and appears in the information
brochure, but is not written in the consent
forms that state the risk as 1 : 200.
Is the decision to undergo amniocentesis
affected by level of risks?
When asked whether the risk estimates (risk
for DS and procedure-related risk) were impor-
tant for their decision making, ten of the
Young (33%) and eight of the AMA (27%)
women replied that they were helpful. Eleven
of these 18 (9 Young and 2 AMA) did not
have amniocentesis (61%).
Eleven of our 60 participants had risk esti-
mates in the highest range, above 1 : 1000
(1 : 410800). However, only six of them
were aware of the result at the time of the
decision. Seven of these 11 women, all of
whom were above age 35, had amniocentesis.
Two of the six women who waited for their
screening results had amniocentesis. On the
other end of the spectrum, 14 of our 60 par-
ticipants had the lowest possible risk estimate
of 1 : 20 000. Among them, three had amnio-
centesis (two were AMA and one was
34 years old). One of these AMA women did
not wait for the result before undergoing
amniocentesis.
Factors that influence the decision regarding
amniocentesis in AMA and Young women
The 52 transcribed interviews were searched
for factors that the participants mentioned as
important for their decision (and were not
2014 John Wiley & Sons Ltd
Health Expectations, 18, pp.23062317
2311
presented as multiple-choice answers). Each
participant could mention several dierent rea-
sons. These results are shown in Table 3.
Age is the most signicant factor cited by
AMA women as a reason to have amniocente-
sis. Next factors are: wanting certainty (as
opposed to statistical estimates), having per-
formed amniocentesis in a previous pregnancy
and the recommendation of the doctor. The
Young women mentioned procedure-related
risk as the most common reason for not having
amniocentesis, and others are having a normal
statistical estimate, doctors recommendation
and age. Age and doctors recommendation
were mentioned by both groups, but as oppo-
site inuences.
Table 4 brings citations from the women as
pertaining to the most popular reasons they
mentioned for either performing or not per-
forming amniocentesis. The citations allow
hearing the womens voices and their unique
interpretations of the reasons that led them to
test or to refrain from testing.
Hypothetical risk scenarios
To evaluate the role of risk estimates in
womens decisions, we asked two hypothetical
questions regarding predicted behaviour in two
risk-level scenarios.
Among the 32 women who did not have
amniocentesis, 19 (59%) women (16 of them
Young) said they would consider having
amniocentesis at 1 : 100 risk for DS. An
additional 3 (9%) women (two of them
Young) said they would maybe have
amniocentesis at that risk level. This result
shows that the majority of these women
would consider a high-risk estimate as
important.
Among the 27 women who had amniocente-
sis, only one (36 years old, 1 : 740 risk for DS)
said that she might have considered not hav-
ing amniocentesis at a 1 : 10 000 risk for DS.
This shows that the risk level was not a mean-
ingful factor in the decision for most women
who decided to have amniocentesis in this
study.
2312 Age is the main factor affecting amniocentesis uptake, J Grinshpun-Cohen et al.

Table 3 The reasons for having/not having amniocentesis: presented in descending order of popularity (from top to bottom).
The reasons were inferred during the interview not as a multiple-choice or menu-itemed question

Age group AMA AMA Young Young Total

Did not Did not
Had have Had have
amniocentesis amniocentesis amniocentesis amniocentesis
Amniocentesis (number of interviews*) (24) (4) (2) (22)

Age 21 6 27
Procedure risk 3 3 14 20
Doctors recommendation 7 1 9 17
Normal statistical risk estimate 4 11 15
Certainty that foetus is normal 8 2 10
Previous amnio 8 8
Government funding 4 4
Previous children/healthy family 4 4
Abnormal child is worse than miscarriage 3 3
Family/friends 2 1 3
Amnio detects other abnormalities except 1 1 1 3
DS
Having control 2 2
Had exposure to DS 2 2
May not terminate a DS pregnancy 1 1 2
Fear of needles 1 1

AMA, advanced maternal age; DS, Down syndrome.

*Based on the 52 fully transcribed interviews only.

Age and doctors recommendation were mentioned by AMA women as a reason to have amniocentesis and by Young women as a reason
not to have the procedure.

Among the 21 AMA women who mentioned age as a reason for amniocentesis, 14 were asked what that risk was. Only five of them (36%)
could accurately quote that risk.

Had exposure to information about families with Down syndrome.

Our results show that being above age 35

Discussion
This study aimed to examine pregnant
womens decision process with regard to pre-
natal screening, and specically, the degree to
which they take into account triple serum
screening results when considering whether or
not to undergo amniocentesis.
A recent systematic review29 that attempted
to identify the factors inuencing the uptake of
invasive pre-natal testing by AMA women has
found that it is dicult to draw rm conclusions
as to the inuential factors. The researchers
looked at external and psychological factors,
but did not examine womens subjective risk
assessments or their main reasons for having
amniocentesis. Our current study lls this gap as
we have directly asked our participants about
the factors that aected their decision and
explored their subjective risk perception.
had a strong inuence on womens use of the
results to decide whether they would perform
amniocentesis. Thus, low statistical risk for
DS did not aect the decision to have
amniocentesis for women over 35, who were
likely to undergo amniocentesis regardless of
the results. Notably, the majority of AMA
participants did not plan to have triple serum
screening or to wait for its results before
undergoing amniocentesis. AMA women sta-
ted that age was the most signicant factor
for their decision to have amniocentesis
although most of them did not know the
exact risk associated with their age. Young
women stated the risk of amniocentesis as
the most signicant reason for avoiding the
procedure. DS risk was also important for
the decision about having the procedure for
young women.

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Health Expectations, 18, pp.23062317
 Age is the main factor affecting amniocentesis uptake, J Grinshpun-Cohen et al. 2313

Table 4 Representative quotes for the most commonly stated reasons

Age group AMA AMA Young Young

Amniocentesis Yes No Yes No

Age* My age was what led me to have I did not have an amnio
the test because of my age
Because of my age we made a (29)
decision to have the test
regardless of the results
Procedure risk Because there is a risk to both I was afraid of the risk I think that the test is
mother and fetus we debated dangerous and its best
whether to have it to avoid it if its
unnecessary
Once I understood that
the procedure has a
risk, even a small one,
I decided not to do it
Doctors recommendation* My doctor referred me for My doctor (screening) result was
amnio anyway because of said that normal
my age I dont *My doctor didnt want
My doctor said that since need to to look at my results
I am 38 it is better to have have the and said that since I
the test than take test am 35 I must have an
unnecessary risks because amnio
the
I asked my doctor, he said that I
dont need it (amniocentesis)
I discussed it with my doctor
and he did not recommend
(amniocentesis)
Normal statistics My result was very good so It was a low risk, thats
I did not have an amnio why I did not have the
I had a risk estimate of amnio
1 : 9400 which is good
Certainty I feel that it is important for me The
to make sure that there is no statistics
problem with the baby, as much wasnt
as currently possible enough
It was Important for me to have for me
certainty regarding birth defects
Previous I had an amnio in all my
Amniocentesis previous pregnancies

AMA, advanced maternal age.

*Two women claimed that they were reprimanded by their doctor for not having amniocentesis in their age.

For our participants, age 35, which is associ-
ated with both physician recommendations and
government funding for amniocentesis, served
as an anchor in the decision to perform amnio-
centesis. While most women could not state
their age-related or screening-based risks, they
clearly considered being over 35 years of age
as a determining factor. So much so that most
of the AMA women did not take statistical risk
estimates into account when deciding about
amniocentesis. Most of our AMA participants
knew that their risk estimate was normal, but
still considered themselves at high risk due to
their age. Other factors, such as procedure-
related risk, were secondary and had only a
minor eect on the decision.

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Health Expectations, 18, pp.23062317
2314 Age is the main factor affecting amniocentesis uptake, J Grinshpun-Cohen et al.
Younger women, on the other hand, did
state the procedure-related risk and having a
normal screening result as the two main factors
aecting their decision not to have amniocente-
sis. Even though the majority of the young
women could not recall their screening result,
they were four times more likely to accurately
recall it than AMA women. It thus seems that
the decision process of the young women is
more informed than that of the AMA women.
Several of the AMA women said that in previ-
ous pregnancies, they did not have amniocente-
sis because their screening results were normal,
but their point of view was dierent now that
they were old.
A small minority of AMA women mentioned
procedure risk, normal risk estimates and the
fact that amniocentesis detects other abnormal-
ities besides DS, as their reasons for action.
Thus, women choose to undergo amniocentesis
for the certain detection of DS disregarding the
actual risk and other factors. It is possible that
if a proper explanation about the screening test
was given, women would still have chosen to
have the procedure, but would have stated
other relevant reasons and have arrived to the
decision in a more informed way, based on bet-
ter knowledge and understanding. Previous
studies that explored this issue did not speci-
cally compare AMA and younger women;
thus, our results provide a unique perspective
on the subject. While it was previously found
that subjective factors, and not knowledge, are
important for the decision, the dual interpreta-
tion of age as a high- or low-risk factor is very
important for the understanding of the decision
process of women with low screening risk for
DS.
Several contextual factors should be consid-
ered when evaluating Israeli womens decision
process regarding amniocentesis. The rst is
the eect of dierential government funding.
While young women only receive funding for
amniocentesis if they have abnormal screening
results or ultrasound ndings, AMA women
have free amniocentesis without any medical
indication. Our participants appeared to inter-
pret funding as a medical recommendation and
as a social norm. It is interesting to explore
whether AMA women would still have amnio-
centesis if it was not funded. We did not specif-
ically ask this question; however, the women
did not mention the test being free as a reason
to have it, and young women did not mention
cost as a signicant reason not to have the test.
It is also worth mentioning that funding for
amniocentesis for AMA women is available in
many countries.
The second contextual factor is the attitude
of the medical community towards pre-natal
testing for AMA women. It is important to
note that the majority of our AMA partici-
pants had the blood drawn for the triple test
immediately before having the amniocentesis.
This practice is based on the recommendation
of some doctors and geneticists to have the
triple serum test regardless of amniocentesis,
as it can detect risk for SmithLemliOpitz
syndrome, Xlinked Ichthyosis and other con-
ditions (all unrelated to maternal age) by
detecting extremely low levels of estriol
(UE3) in maternal blood.30 Five AMA
women mentioned this as their main reason
to have the triple test. These women empha-
sized that the estimated risk for DS was not
signicant for them. This timing of the triple
serum screening suggests that the test is seen
as part of routine pre-natal care and is not
considered as a decision factor for amniocen-
tesis by either the women or their medical
caretakers. Further, most women reported
that they did not receive an explanation
about the triple test from a medical practi-
tioner, and some found the information on
the internet and in the media. It is possible
that lack of discussion and limited under-
standing of the purpose and importance of
the test contributed to the disregard of its
results during decision making. The disregard
of a screening test when deciding about a
diagnostic test may be relevant to other med-
ical situations. It is in agreement with the
previously mentioned ndings of Linnenbrin-
ger et al.7 regarding the overestimate of indi-
vidual Alzheimer risk despite the results of
genetic screening.
2014 John Wiley & Sons Ltd
Health Expectations, 18, pp.23062317
 Age is the main factor affecting amniocentesis uptake, J Grinshpun-Cohen et al.
The eect of physicians attitudes on the
actions and choices of their patients was previ-
ously explored by Gurmankin et al.31 who
found that physicians recommendations can
lead people to make decisions that go against
what is best and against what they would
otherwise prefer. Heckerling et al.32 showed
that, according to patients, the choice of pre-
natal test was made entirely or mostly by the
physician in 14% of cases and was shared
equally between patient and physician in 37%
of cases. According to a recent survey, over
60% of Israeli obstetricians would recommend
amniocentesis to AMA women with normal
screening results.33 Our results suggest that the
common attitudes of the medical community
(referred to by our participants as doctors
recommendation) have a signicant eect on
the decisions of individual women. The current
study design could not parse the womens atti-
tudes and actions from the attitudes and
recommendations of their physicians. Further-
more, two of our AMA participants mentioned
being reprimanded by their physician for not
having amniocentesis, and others mentioned
feeling considerable pressure from their envi-
ronment to have the procedure.
It seems plausible that the combination of
funding that is based on age alone and the rec-
ommendations of many physicians are perceived
by women as an independent risk factor. If the
policy makers and the medical community insin-
uate that amniocentesis is indicated after age 35,
it is hard to expect the non-expert women to
make an independent decision.
In western countries, a womans informed
choice is considered a basic principle in the
carrying out of pre-natal screening and diagno-
sis that are presented as oering new reproduc-
tive choices for women and couples.34 A
denition of informed choice as adapted from
OConnor and OBrien-Pallas35 is one that is
based on relevant knowledge, consistent with
the decision-makers values and behaviourally
implemented. We show a signicant lack of
knowledge among our participants, thus cast-
ing doubt whether the decision to undergo
amniocentesis is indeed informed.
2014 John Wiley & Sons Ltd
Health Expectations, 18, pp.23062317
2315
This study has several limitations. The sam-
ple size was relatively small and not completely
representative of the general Israeli population,
but it does represent a large population of sec-
ular, educated, Israeli women who utilize many
pre-natal tests.
There is a signicant correlation, of medium
magnitude, between education and amniocente-
sis uptake in our sample of women. However,
as education is highly correlated with age, age
is confounding this correlation. There is a very
weak negative correlation between education
and recall of screening results; thus, this sample
being highly educated should not alter our con-
clusions as for the signicance of age for the
decision.
A certain limitation in this study is that the
women were interviewed 12 months after they
have received their screening results and reached
their decision regarding amniocentesis. It is pos-
sible that the time lag contributed to the rela-
tively low recall rates of the risk estimates and
that at the time of decision, the women had bet-
ter knowledge of their risks. However, the
majority of AMA women chose not to wait for
their screening results before having amniocen-
tesis, and others claimed that the risk estimates
had no eect on their decision. The small num-
ber of the remaining women did somewhat limit
the statistical power of the comparisons between
AMA and young women.
We chose to explore the eect of the second
trimester triple marker screen rather than the
rst trimester screening or the integrated
screening that may have higher specicity and
sensitivity. The triple test is the only test that
was uniformly recommended and funded for
all pregnant women at the time of the study.
As most women did not recall their results or
incorporate them into the decision, we believe
that the eect of other statistical tests would
not dier.
Future research could further explore the
decision process of AMA women undergoing
amniocentesis. One potential direction for
doing so is in the context of physician attitudes
and recommendations as well as the eect of
funding policies.
2316 Age is the main factor affecting amniocentesis uptake, J Grinshpun-Cohen et al.
It was previously shown that the use of deci-
sion aids can improve informed choice36,37
which opens a possibility for further explora-
tion of the process among pregnant women in
Israel and other places. New technologies, such
as non-invasive testing for foetal trisomy and
microarray-based techniques, are being recently
introduced into the pre-natal testing eld. Many
are oered directly to consumers. Understand-
ing of decision processes can help in the integra-
tion of these technologies into existing practices
by both patients and medical community.
Funding sources
This research was supported by The Israel
Notional Institute of Health Policy Research.
Conflict of interest
No conict of interest has been declared.
Supporting Information
Additional Supporting Information may be
found in the online version of this article:
Data S1. Questionnaire.
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