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Journal of Genetic Counseling, Vol. 11, No. 4, August 2002 (°

C 2002)

Women’s Knowledge of Prenatal Ultrasound

and Informed Choice
Ruth J. Kohut,1,3 Deborah Dewey,2 and Edgar J. Love1

This study evaluated women’s understanding of prenatal ultrasound in terms of

meeting the requirements for informed choice. A cross-sectional survey was con-
ducted to evaluate (1) how information is provided, (2) women’s perceived value
of the information received and, (3) their understanding of ultrasound in relation
to the principles of informed choice. Women (n = 113) completed a questionnaire
prior to their 18-week ultrasound. Fifty-five percent stated they received no in-
formation from their care provider. Only 31.9% considered health care providers
as a “very helpful” source of information. Yet, 69.0% stated their care provider
gave them information that facilitated their understanding. Gaps were identified
in women’s understanding of ultrasound. Specifically, 46.0% did not view ultra-
sound as a screen for anomalies; some were uncertain about the safety (18.6%),
diagnostic capabilities (26.5%), and limitations of testing (37.2%). These results
suggest that women’s understanding of ultrasound does not meet the requirements
of informed choice.
KEY WORDS: informed choice; informed consent; prenatal ultrasound; women’s knowledge.

INTRODUCTION

Major congenital malformations are present in 2–5% of newborns and ac-

count for 20–30% of all perinatal deaths worldwide (Chitty et al., 1991). Thirty to
50% of serious birth defects are detectable by second trimester ultrasound screen-
ing (Todros et al., 2001). Most congenital anomalies occur in newborns of healthy
low-risk women with no known family history of genetic concern. With advances
1 Departmentof Community Health Sciences, University of Calgary, Calgary, Alberta, Canada.
2 Departmentof Pediatrics and Psychology, University of Calgary, Calgary, Alberta, Canada.
3 Correspondence should be directed to Ruth Kohut, Division of Health Surveillance and Epidemiol-
ogy Division, Health Canada, Department of Medical Genetics, Alberta Children’s Hospital, 1820
Richmond Road S.W., Calgary, Alberta, Canada T2T 5C7; e-mail: ruth kohut@hc.sc.gc.ca.

265

1059-7700/02/0800-0265/1 °
C 2002 National Society of Genetic Counselors, Inc.
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266 Kohut, Dewey, and Love

in ultrasound technology and the increase in prevalence of women having sec-

ond trimester ultrasound testing, more fetal anomalies are prenatally detectable.
The Society of Obstetricians and Gynecologists of Canada recognize the clini-
cal benefits of early identification of unexpected congenital anomalies in low-risk
pregnancies and support the use of 18–20-week population screening (SOGC,
1999). Alberta Health also supports offering all pregnant women the option of
a second trimester prenatal ultrasound as a part of their routine prenatal care
(Alberta Clinical Practice Guideline Program, 1996). Ultrasound screening, how-
ever, has added a new dimension to prenatal testing, as in most cases, fetal problems
are detected in women unaware of their risks and the diagnostic capabilities of ul-
trasound testing.
Informed consent, a discrete event of obtaining legal approval from a patient
for a procedure, is the traditional method practiced in medicine. This concept may
be satisfactory for a number of interventions performed; however, there has been
a dramatic shift away from the paternalistic “clinician decides, patient follows” to
“clinician informs but does not decide” process of decision-making.
The Ethics and Public Policy Committee of the Canadian College of Medical
Geneticists support women’s rights in making autonomous and informed choices
regarding prenatal interventions, which may affect themselves or their fetuses.
However, for women to make an informed choice, information about prenatal ultra-
sound must be provided. Unlike the discrete event of an informed consent prior to a
medical intervention, informed choice is considered a process of decision-making,
which evolves through the evaluation of information and personal values related
to testing. Disclosure, comprehension, and voluntary choice are the tenets of the
informed choice process (Chervenak et al., 1989; Etchells et al., 1996; Summers,
1994). Criteria for disclosure include a thorough discussion of the purpose, advan-
tages, risks, limitations, and implications of testing. An informed choice can only
be made if women receive all the information relevant to the decision to undergo
or forgo the test and feel free of coercion or persuasion (Truog, 1996). Informa-
tion presented must be free of biases and directives. The principles of informed
choice are directed by the ethical principles of autonomy and beneficence. Respect
for patient autonomy obligates the prenatal provider to acknowledge the values
and beliefs of the pregnant woman. Facilitating an informed choice is believed to
influence a woman’s sense of control and consequently, their personal well be-
ing (Chervenak et al., 1989). Additionally, it has been suggested that this process
may help women be more prepared psychologically, should a fetal anomaly be
detected.
Research has suggested that women have limited knowledge of the purpose,
benefits, limitations, and potential consequences of prenatal testing, and as a re-
sult, lack information to make an informed choice (Goel et al., 1996; Green et al.,
1993; Marteau, 1995; Marteau et al., 1992). In Alberta, the provision of pretest
information is not currently a prerequisite to second trimester prenatal ultrasound
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Ultrasound and Informed Choice 267

screening. No research, however, has examined the type and amount of information
that women are provided with regarding prenatal ultrasound and the elements of
informed choice. Access to information about prenatal ultrasound screening may
facilitate an informed choice, and better prepare women for a possible adverse fetal
outcome. The purpose of this study was to examine whether women received and
retained sufficient information about the purpose, benefits, limitations, and poten-
tial consequences of prenatal ultrasound testing to facilitate an informed choice. A
secondary goal was to investigate women’s views regarding the information that
they were provided prior to prenatal ultrasound testing.

METHODS

Women who attended a radiology clinic in Calgary, Alberta, for their second
trimester ultrasound scan were approached to participate in this cross-sectional
survey. This clinic was selected because it had a large obstetric ultrasound prac-
tice. Inclusion criteria were as follows: (1) the woman was experiencing a healthy
uncomplicated pregnancy, (2) the woman was in her 18th–20th week of an un-
complicated pregnancy, and (3) the woman had not had a previous high-risk
pregnancy.
The staff was instructed to inform the women that the study was strictly
voluntary and detailed information about the study was provided in their pack-
age. The package provided to the women included a letter that indicated the
purpose and benefits of the research project, means of maintaining confidential-
ity and research ethics, and the investigators contact number. Women interested
in receiving information about the findings of the study were asked to provide
their address. If women agreed to participate, they completed the questionnaire
and returned it to the reception staff prior to their ultrasound test. Ethical ap-
proval for this study was provided by the Conjoint Health Research Ethics Board,
University of Calgary. Analysis of question items was primarily descriptive in
nature.
An estimated 15–23% of women attending the radiology clinic, who met the
criteria for the study, were approached by the reception staff to participate. The
radiology clinic selected for this study performed approximately 45 obstetric ultra-
sounds per week. There was no suggestion that the staff were biased in the women
they approached to participate. Of those approached, all but one woman agreed to
participate. In total, 117 women completed the questionnaire during the 24-week
study period (March–September, 1998). We believe that the participation rate was
high because the study was of particular interest to women, the questionnaire was
short, and women had the time to complete it while waiting for their appointment.
The woman who declined stated that she was a physician and would bias the study
results.
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268 Kohut, Dewey, and Love

Instrument

We reviewed the literature and did not identify a knowledge questionnaire spe-
cific to prenatal ultrasound. Therefore, an instrument was developed and evaluated
over several phases to determine whether it was clearly worded, free from major
biases, and elicited the type of information envisioned. Appropriate revisions were
made at each phase. To assess content and face validity, the questionnaire was re-
viewed by experts in the fields of Obstetrics, Genetics, Radiology, Psychometrics,
Research Analysis, Behavioral Psychology, and Epidemiology. The questionnaire
was also discussed with six nonpregnant women, three who had delivered a child
with a birth defect and three who delivered healthy children. These women shared
their experiences with prenatal ultrasound and their impressions of the question-
naire items. The questionnaire was pretested on 14 pregnant women attending a
group information session on prenatal testing. A descriptive analysis performed
indicated that the question items and the analysis procedure did provide the kind
of results that would be appropriate for addressing the research questions.
Excluding the demographic information requested, the questionnaire was
composed of 21 questions (available on request). The first three questions asked
about women’s source(s) of information. Using a closed-ended question women
were asked what information they received for their prenatal care provider. They
were then asked to rate how helpful this information was to them on a 4-point
Likert scale, which ranged from “not at all helpful” to “very helpful.” They were
also asked who provided them with this information. Health care providers as
sources of information included their family doctor, obstetrician, midwife, ge-
netic counselor, and nurse. Other sources included friends, relatives, prenatal
classes, newspaper and magazines, television, the internet, and books. Women
were also asked whether the information received from their prenatal care provider
helped them better understand the benefits and limitations of ultrasound. In ad-
dition, they were asked whether they were provided with a choice about the
testing.
Eight questions related to the concept of informed choice in relation to prenatal
ultrasound testing were then asked. Women’s understanding as to the purpose and
limitations of testing was addressed using the following closed- and open-ended
questions:

What is the main use of ultrasound?

Do you know of any problems an ultrasound can identify in the baby?
Do you know of any problems an ultrasound can fail to identify in the baby?
True or False: A “normal” ultrasound result guarantees that the baby will be born
free of birth defects.

The perception of the medical risks of ultrasound to the woman and her
baby were gathered with the following open-ended questions: “Is there a risk to
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Ultrasound and Informed Choice 269

the mother (baby) from prenatal ultrasound?” Lastly, the benefits were measured
using an open-ended question: “How will having an ultrasound benefit you?”
Finally, the women were asked to complete some questions that would provide
information about the sociodemographic makeup of the sample.

RESULTS

Four of the questionnaires were excluded from the analysis: three because
they were incomplete and one because the women did not meet the inclusion
criteria. Therefore, 97.4% (n = 113) of the questionnaires were included in the
final analyses. The mean age of the participants was 30.4 years (95% CI: 29.5–
31.2 years). The vast majority of participants (96.5%; n = 109) were married
or living common law. Most women (81.4%; n = 92) had some postsecondary
education, 26.5% (n = 30) had some health care training, and 76.1% (n = 86)
were employed outside of the home. Ethnicity was not requested but English was
the first language of all participants. Forty-four percent (n = 50) of women were
primiparous. Over half of the women (56.6%; n = 64) were receiving prenatal
care from their family physician. Nine percent (n = 10) were referred to another
family physician practicing obstetrics. Twenty percent (n = 23) were receiving
their prenatal care through a low-risk maternity clinic (run by family physicians
with a special interest in obstetrics). An obstetrician or midwife was providing
care to 9.8% (n = 11) and 2.6% (n = 3) of the women respectively. The sources
of information and the perceived usefulness of the sources are reported in Table I.
The family physician was the primary source of information for 36.3% (n = 41)
of the women.

Table I. Sources and Usefulness of Sources of Prenatal Ultrasound Information

Usefulness of information received
Very Somewhat Somewhat Not at all No
helpful, helpful, unhelpful, helpful, response,
Source Total n (%) n (%) n (%) n (%) n (%) n (%)

One or more health 97 (85.8) 31 (31.9) 54 (55.7) 2 (2.1) 2 (2.1) 8 (8.2)

care sourcesa used
No health care 13 (11.5)
sources used
No response 3 (2.7)
Family doctor only 41 (36.3) 15 (36.6) 26 (63.4) 0 0 0
Friends/relatives (not 50 (44.2) 18 (36.0) 29 (58.0) 1 (2.0) 0 2 (4.0)
exclusively)
Media (news, internet, 26 (23.0) 2 (7.8) 19 (73.0) 0 3 (11.4) 2 (7.8)
TV, magazines)
Books 53 (46.9) 25 (47.2) 20 (37.7) 3 (5.7) 0 5 (9.4)
a Health care sources included family physicians, obstetricians, midwives, nurses, prenatal classes, and
genetic counselors.
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270 Kohut, Dewey, and Love

In terms of information received regarding prenatal ultrasound testing,

16 (14.1%) chose not to respond to the question, 62 of the remaining 97 respon-
dents (54.9%) claimed to have received no information, apart from instructions
regarding the appointment time and location. Twenty women (17.7%) stated that
they had had some discussion about prenatal ultrasound testing with their health
care provider. Fifteen women (13.3%) received written information. In response to
the 4-point Likert scale question, “My care provider gave me information on pre-
natal ultrasound that helped me understand its benefits and limitations,” 60 women
(53.1%) selected the “somewhat agree” response option, while only 18 (15.9%)
were strongly convinced that their prenatal health care provider gave them infor-
mation that facilitated their understanding. Twenty-two women (19.5%) disagreed
with this statement, and the remaining 13 (11.5%) of the sample chose not to
respond.
A Fisher’s exact test (FET) was used to evaluate if determinants such as
age, parity, education level, training in health education, or the type of prena-
tal care provider influenced the participants’ response to above question. Parity
was the only factor that was found to be significantly associated (FET, p =
0.04). Of multiparous women 26.4% (n = 14) strongly agreed with their prena-
tal care provider’s disclosure process compared to 6.4% (n = 3) of nulliparous
women (FET, p = 0.04). All of the multiparous women had experience with
prenatal ultrasound in their prior pregnancies, and one of the three nulliparous
women had an ultrasound in her 1st trimester prior to completing the
questionnaire.
In response to a 4-point Likert scale question on women’s views of their au-
tonomous right to make a decision about testing in general, 42.5% (n = 48) of the
participants felt strongly that it was a woman’s choice whether or not to proceed
with testing. Forty-one women (36.3%) “somewhat agreed” with the statement,
20 women (17.7%) disagreed that it was a woman’s choice, and 4 (3.5%) elected
not to respond. Of the responses to whether prenatal ultrasound was presented as
an option to women by their providers, 62 women (54.9%) stated that they were
not informed it was their option whether or not to proceed with testing, 25 (22.1%)
stated they were informed of this, 14 (12.4%) and 12 (10.6%), respectively, did
not remember or chose not to respond.
The participants’ understanding of the purpose, benefits, medical risks, limita-
tions, and drawbacks of ultrasound testing were evaluated. Women were provided
four response options to the question, “What do you understand is the reason
for your ultrasound today?” Only 54.0% (n = 61) considered screening for birth
defects as the reason for their 18-week scheduled scan. Of the remaining, con-
firmation of the due date was provided by 20.3% (n = 23) of respondents,
8.0% (n = 9) did not respond, and 4.4% (n = 5) were uncertain. When women
were then asked, “What is the main use of second trimester ultrasound?” 94.6%
(n = 107) chose the correct response “to check the age, growth and development
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Ultrasound and Informed Choice 271

of the baby,” while only 4.4% (n = 5) women selected the incorrect response “to
test for blood disorders.” One woman did not respond.
In response to an open-ended question on the benefits of ultrasound testing,
55.6% (n = 64) of the women surveyed stated that the primary benefit of ultrasound
testing was reassurance and peace of mind. Reproductive choice regarding the
management of their pregnancy should a fetal anomaly be detected was given by
7.8% (n = 9) of the women. The remaining women noted other benefits, such as
a confirmation of the due date, determining fetal gender, ruling out reasons for
obstetric complications, and looking for twins.
Although 80.5% (n = 91) of the participants correctly stated that there was
no medical risk to the mother, 13.3% (n = 15) were uncertain and 4.4% (n = 5)
stated that there was a risk. A total of 1.8% (n = 2) women chose not to respond.
There was considerably more uncertainty regarding women’s understanding of
the medical risks of diagnostic ultrasound exposure to the developing fetus. Only
68.1% (n = 77) of the participants asserted that there was no medical risk to the
baby from ultrasound testing. Concern regarding the possible or delayed medical
risks of diagnostic ultrasound exposure on the developing fetus was expressed by
11.5% (n = 13) of women. Hearing damage, ear disorders, frequent ear infections,
and birth defects were the themes of medical risks identified. Uncertainty regarding
possible risks of ultrasound exposure to the fetus was given by 18.6% (n = 21) of
the women, and 1.8% (n = 2) chose not to respond. The paired responses of the
above two questions are depicted in Table II. Of women who responded to both
medical risk questions (n = 110), 74 stated that prenatal ultrasound posed no risk
to the mother or the fetus. Three women stated that ultrasound posed a risk to the
mother and her fetus. Fourteen women were uncertain about the medical risks to
the woman or to her fetus.
Women’s knowledge regarding the diagnostic abilities of prenatal ultrasound
testing was examined using the following open-ended question: “Do you know of
any problems an ultrasound can identify in the baby.” Answers to this question
were considered correct only when an appropriate example was provided. Of those
who responded, 70.8% (n = 80) correctly identified at least one fetal anomaly, but
26.5% (n = 30) did not know, or could not correctly provide an example, and

Table II. Women’s Understanding of the Medical Risks of Ultrasound

Exposure
Medical risk to the baby
Medical risk to
the mother No Yes Uncertain Total

No 74 10 6 90
Yes 1 3 1 5
Uncertain 1 0 14 15
Total 76 13 21 110
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272 Kohut, Dewey, and Love

2.7% (n = 3) did not respond. To investigate women’s understanding of the lim-

itations of prenatal ultrasound the following question was asked: “Do you know
of any problems an ultrasound can fail to identify in the baby.” Of the women
surveyed, 37.2% (n = 42) stated that they were unaware of any fetal problems that
could go undetected by ultrasound screening. At least one fetal anomaly not iden-
tifiable by ultrasound was correctly noted by 57.5% (n = 65) of the participants.
A total of 5.3% (n = 6) of participants chose not to respond.
To examine the participants’ views of the possible consequences of ultra-
sound testing, they were asked, “Can you think of any drawbacks to having an
ultrasound.” Over half (52.2%, n = 59) of the women stated that they could not
think of any drawbacks to testing, and 17.7% (n = 20) chose not to respond. The re-
maining 30.1% (n = 22) identified one or more consequence to testing. Responses
included a full bladder (6.2%; n = 7), inadvertent disclosure of fetal gender (2.6%;
n = 3), and delayed deleterious effects of ultrasound on the fetus (10.6%; n = 12).
Only 4.4% (n = 5) women identified the diagnostic limitations of ultrasound as a
drawback. The comments from these women included the following: “[receiving]
a false sense of security-not 100% accurate or fail safe,” “human error is always
a possibility,” “Not 100%,” “False identification of abnormalities leading to un-
necessary invasive tests,” and “false assurance or unnecessary.” Of note was the
finding that only 4.4% (n = 5) women considered the implications of having a
fetal anomaly detected. Their comments included the following: “Finding out
something is wrong,” “Finding out bad news,” “Finding out the baby is abnormal
(good to know but a scary thought),” “What to do about minor problems,” and
“If something is abnormal-decision early about what to do.” Two (1.8%) women’s
comments were distinct from any others: “knowing is not always best” and “darned
expensive to fund.”

DISCUSSION

The main purpose of this study was to investigate women’s understanding

of prenatal ultrasound testing in terms of meeting the requirements for informed
choice. The findings indicated that for the most part, for the women surveyed in
this study, their understanding of ultrasound testing did not meet the requirements
of informed choice. Specifically, many of the respondents did not recall having
been fully informed about the purpose, benefits, limitations, and consequences
of ultrasound testing. It was somewhat disturbing to find that approximately 1 in
10 women stated that they had received no information from any health care source
regarding prenatal ultrasound prior to their scan. Furthermore, of those women who
received information from the family doctor as their sole health care source, only
about one third of those considered their family doctor as “very helpful.” This
suggests that a large proportion of health care providers do not adequately discuss
prenatal ultrasound with their patients prior to testing.
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Ultrasound and Informed Choice 273

Despite the low level of perceived usefulness of information received from

prenatal care providers, many of the women indicated that their health care provider
provided them with information that facilitated their understanding of prenatal
ultrasound. One possible explanation for this incongruity relates to how prena-
tal screening is presented rather than to what information is presented. Prenatal
screening is considered by the majority of women and their care providers as a
routine standard of practice in Alberta, Canada (Carroll et al., 1997). If prenatal
providers handle ultrasound testing in such a routine “matter of fact” manner as
they would a simple hemoglobin blood test, for example, women may also under-
rate the importance of understanding the testing process and fail to perceive the
need for full disclosure and informed choice. This presentation could be arguably
viewed as biased and directive, which is against the principles of disclosure in the
informed choice process.
Based on the ethical principles of informed choice, whether or not to pro-
ceed with prenatal testing is a woman’s choice. In other words, testing should be
presented to women as an option, and the decision to proceed with testing should
only be made once the woman has received sufficient information to make her
choice. A disparity in this study was found between the participant’s views of their
autonomous right to make a choice about testing and whether they were explicitly
told that they had this choice. Over two thirds of women who participated in this
study either strongly or somewhat agreed that the choice about testing should be
theirs, but less than one third recalled having been given a choice. Hence, most
of the women were not informed of their autonomous right of choice. There may
be an underlying assumption among the prenatal care providers that the women
are aware of this choice or alternatively, a noninvasive procedure such as prenatal
ultrasound does not obligate the caregiver to discuss with the woman her right to
choose whether or not she wants to undergo this procedure.
There appears to be a deficiency in the respondents’ understanding of prenatal
ultrasound in relation to the elements of informed choice. It was somewhat disturb-
ing to find the contrast between women’s views of the purpose of second trimester
ultrasound and their perceptions regarding the purpose of their ultrasound test. The
“evaluation of fetal growth and development” was considered by the vast majority
of respondents as the main purpose of ultrasound screening; however, only half of
the women surveyed considered screening for birth defects as the reason for their
18-week ultrasound scan. One could postulate that the respondents were aware that
the purpose of ultrasound was to screen for birth defects, but did not wish to apply
this knowledge to their own pregnancy. A second possible explanation for this
disparity may be response bias. It is feasible that the response options provided in
the general question pertaining to the use of second trimester ultrasound screening
“cued” the respondents to the correct answer. If this was the case, the extent of the
respondents’ knowledge would be in question. Two prior publications found that
only 60–77.0% of women surveyed considered “screening for fetal anomalies” as
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274 Kohut, Dewey, and Love

the primary purpose of second trimester ultrasound testing (Green et al., 1993;
Newburn and Greedy, 1996).
Peace of mind was perceived as the primary benefit of ultrasound testing.
Naturally, women hoped that their baby would be normal and did not want to
consider the other options. Slightly more than half of the respondents did not
identify any consequences or drawbacks to prenatal ultrasound testing. Further, the
small number of women who openly considered ultrasound as a means of screening
for fetal anomalies did not uniformly agree that this new knowledge would be of
personal benefit. In the two open-ended questions, “How will an ultrasound benefit
you” and “Can you think of any drawbacks to having an ultrasound,” contrasting
opinions on the detection of fetal anomalies were noted. Nine women considered
the possibility of detecting a fetal abnormality as a benefit, compared to five women
who considered this knowledge to be a drawback. “Knowing is not always best,”
a comment provided by one woman, best describes this dichotomy.
The prospect of a fetal abnormality may be too emotionally and psychologi-
cally threatening for pregnant women and their care providers to discuss this possi-
bility at length prior to ultrasound testing. In a literature review by Marteau (1995),
62% of women reported, after delivery, having concerns about a fetal abnormality
during pregnancy, but only 17% of them reported this fear while pregnant. This
reluctance by women to talk about fetal anomalies could interfere with discussions
between the woman and her health care provider regarding the purpose of ultra-
sound screening for fetal abnormalities. Some of the fear women experience in
pregnancy may be a result of their lack of understanding of what birth defects are
in terms of the birth prevalence, implications to the unborn child, and medical and
surgical management available to treat the condition. A discussion with women
about birth defects and prenatal ultrasound testing in a nonthreatening manner may
facilitate relay some fears and facilitate better understanding.
The majority of women surveyed correctly responded to the “true” or “false”
question pertaining to the diagnostic limitations of second trimester ultrasound
screening. Yet, when asked what fetal problems ultrasound may fail to detect in
the second trimester, only one third of the women provided correct examples.
These findings imply that women may be aware that ultrasound is limited in its
diagnostic capabilities of detecting all fetal anomalies, but they are not fully aware
of what those limitations are.
There is considerable scientific evidence that diagnostic ultrasound is a safe
procedure for the woman and her developing fetus (Brent et al., 1991). In spite
of this, there exist a number of misconceptions and uncertainties among pregnant
women regarding the medical risks of ultrasound as evidenced by the findings
of this study. Some women claimed that diagnostic ultrasound exposure placed
the fetus at immediate or delayed medical risk, while others expressed uncertainty
about risks of ultrasound exposure to the woman or her fetus. The underlying reason
for this uncertainty can be postulated. Women may have received the information
about the medical risks of ultrasound but failed to understand it, may not have been
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Ultrasound and Informed Choice 275

provided with information by their health care provider, or alternatively, may have
received and assimilated information from many different sources, which resulted
in confusion and misunderstandings. Nevertheless, this study suggests that some
of the women who participated in this survey were uncertain about the risks of
ultrasound testing.
One of the primary objectives of 18-week ultrasound testing is to evaluate
the fetus for any signs of a birth defect or problem. In cases where a problem
is detected, women and their partners are offered genetic counseling to review
what the problem means and what management or testing options are available to
them in the pregnancy. It is believed among genetic counselors that if women are
informed of the possibility of detecting a problem prior to their ultrasound, they
may (1) select not to proceed with this screen or (2) feel better prepared should
a problem be detected. The results presented above suggest that women may be
satisfied with the amount of information they receive on testing and would not
be interested in receiving any additional information. Further research is required
that specifically investigates what information women believe they should receive
prior to ultrasound testing.
The generalizability of this study’s findings is limited in the population sur-
veyed. Respondents were of a higher sociodemographic status than is true of the
general population. As well, it should be noted that the sample consisted of women
who had decided to have ultrasound testing. Women who were not offered or chose
to refrain from second trimester ultrasound screening may have an entirely differ-
ent understanding of this procedure. The questionnaire instrument requires further
validity testing on larger and more diverse populations to support the validity of the
questionnaire and the study results. Additionally, the role of birth father’s values
and preferences about ultrasound testing was not examined and has not been well
researched. This is an area requiring further study, as the partner’s values could
potentially have impact on how the woman perceives testing.

Implications

This study raises a number of issues and questions regarding the informed
choice process with prenatal ultrasound testing. What are women’s expectations of
their prenatal care providers in regards to the informed choice process? Do women
wish to be fully informed about ultrasound testing? Where is the balance between
maintaining the ethical principles related to informed choice and respecting a
woman’s wishes regarding full disclosure?
In view of the lack of understanding of ultrasound in terms of the elements
of the informed choice process, it would be crucial to evaluate means of improv-
ing women’s knowledge prior to testing. One means is by a prenatal informed
consent that would accompany the relevant information required to aid in the final
decision making and informed choice process. This study scrapes the surface of
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276 Kohut, Dewey, and Love

a very important issue. A qualitative approach is required to evaluate needs and

expectations pregnant women have in terms of what information they find useful
in helping them with decision making regarding prenatal ultrasound testing.

ACKNOWLEDGMENTS

This study was made possible by the assistance of Dr Elliott and Dr Reid
as well as the staff at Elliott, Fong, Wallace and Associates, Radiology Depart-
ment, Calgary. The author also acknowledge Susan Crawford for her statistical
mentoring.

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