Informed choice in prenatal testing: a survey among obstetricians and gynaecologists in Europe and Asia

PRENATAL DIAGNOSISPrenat Diagn 2008; 28: 1238–1244.Published online 4 December 2008 in Wiley InterScience(www.interscience.wiley.com) DOI: 10.1002/pd.2139

Informed choice in prenatal testing: a survey amongobstetricians and gynaecologists in Europe and Asia

Ananda van den Heuvel1, Lyn Chitty2, Elizabeth Dormandy1, Ainsley Newson3, Zuzana Deans3

and Theresa M. Marteau1*1King’s College London, Institute of Psychiatry, Department of Psychology (at Guy’s), Health Psychology Section, London, UK2Institute of Child Health and UCLH, London, UK3Centre for Ethics in Medicine, University of Bristol, UK

Purpose To ascertain the extent to which the value obstetricians and gynaecologists attach to informed choicein the context of prenatal testing varies across countries.

Method The values attached to informed choice and the perceived importance of test decisions reflecting theviews of others considered significant to pregnant women were assessed and compared across obstetriciansand gynaecologists in six countries: UK (n = 176), Netherlands (n = 331), Italy (n = 254), Greece (n = 116),China (n = 116) and India (n = 123).

Results While respondents from the United Kingdom and the Netherlands almost unanimously believedprenatal testing should reflect a parental choice (94%), substantial minorities in Greece, India, and China and toa lesser extent Italy, believed testing should either reflect a family choice or no choice (11–41%). Respondentswho attached a low value to the views of others attached greater value to parental choice. Multinomial logisticregression analysis confirmed the independent predictive value of a country and perceived importance of testdecision reflecting the views of significant others.

Conclusion While many obstetricians and gynaecologists favour prenatal testing reflecting a parental choice,the extent to which their values may affect the likelihood that informed choice is realised, may vary acrosscountries. The impact of these findings on patient autonomy is raised. Copyright 2008 John Wiley & Sons,Ltd.

KEY WORDS: prenatal diagnosis; informed choice; values; cultural diversity; health care professionals; autonomy

INTRODUCTION

Guidelines on the practise of prenatal diagnosis are nowclosely linked with the ethical principle of informedchoice, reflecting efforts to dissociate the procedure frompast eugenics practises as well as greater respect forpatient autonomy. Health professionals play an impor-tant role in implementing informed choice policies whendelivering prenatal diagnosis but, despite professionalresponsibility to adhere to clinical guidelines governingpractise, their own values may affect delivery of pre-testcounselling, and hence the likelihood that informed deci-sion making is truly facilitated in practise. The develop-ment of safer non-invasive prenatal testing techniques(Hahn and Chitty, 2008) may further erode informedchoice by removing the procedure related risk, therebyremoving one barrier to testing. It is therefore timely toascertain the extent to which health professionals’ valuesconcur with the informed choice model.

An informed choice is one that is on the basis of rel-evant knowledge, consistent with the decision-maker’svalues, and behaviourally implemented (Marteau et al.,2001). There are a number of indicators to suggest that

*Correspondence to: Theresa M. Marteau, King’s CollegeLondon, Institute of Psychiatry, Department of Psychology (atGuy’s), Health Psychology Section, 5th floor, Thomas Guy House,London SE1 9RT, UK. E-mail: theresa.marteau.kcl.ac.uk.

the global rhetoric of informed choice is not alwaystranslated into practise. First, analyses of pre-test writ-ten information on prenatal diagnosis offered to preg-nant women suggest that the extent to which practisesare likely to facilitate informed choices varies consider-ably among countries, with Northern European countriesplacing a greater emphasis on choice than SouthernEuropean and Asian countries (Hall et al., 2007; Vanden Heuvel et al., 2008). Second, a recent survey amonghealth professionals in the United Kingdom suggests thatthe theoretical polarisation between choice and coercionis not as clear-cut in practise as in theory with non-directiveness not always achievable or even desired bypatients (Williams et al., 2002). Such sentiments may beparticularly pertinent in nations that have traditionallyadopted a paternalistic approach to health care (Jafareyand Farooqui, 2005).

Some have argued that informed choice, as commonlyconceptualised, reflects a set of Western ideologies thatare not shared by other cultures (Fagan, 2004). Evidencefrom a large-scale international survey among geneticistsoffers some support for this view (Wertz and Fletcher,2004). Investigating views on a range of ethical issuessurrounding genetic testing, Wertz and Fletcher’s (2004)survey revealed a marked cross-cultural variation inbeliefs held towards patient autonomy (which for thepurpose of this article can be defined as self-rule),the ethical principle underpinning informed choice.

Copyright 2008 John Wiley & Sons, Ltd. Received: 30 June 2008Revised: 1 September 2008

Accepted: 21 September 2008Published online: 4 December 2008

INFORMED CHOICE IN PRENATAL TESTING 1239

The pattern of this variation parallels the extent towhich particular societies value individual over referentgroup views, that is, those that are considered moreindividualist or collectivist in orientation (Hofstede,1988).

Others would argue that the assumption that autonomyis not compatible with collectively orientated countriesrests on a misconception of autonomy, confusing it withindependence and individualism (Deci and Ryan, 1985;Ryan and Deci, 2006). Instead they view autonomy as auniversal human need and propose that autonomy mayvary in the shape it takes, reflecting dominant underly-ing cultural value systems (Deci and Ryan, 1985). Withregard to more collectively oriented cultures, a notabletrend illuminated in Wertz and Fletcher’s (2004) geneti-cists’ survey is the prominent role family and communitymembers are afforded in decisions regarding genetic test-ing. This is reinforced by the observation that in Chinaand India modern practise is characterised by a doctor-family-patient triad in which a power shift away frompaternalism towards family autonomy (as opposed to theindividualistic model of autonomy observed in West-ern countries) has taken place (Cong, 2004). This raisesquestions as to whether a more nuanced conceptuali-sation of informed choice, one that accommodates thevalues of others important to the patient, would betterserve these divergent value orientations.

The aim of the current study was to compare obste-tricians’ and gynaecologists’ preferences for prenataltesting to reflect a parental choice, a family choice orno choice and to compare the perceived importanceof such test decisions reflecting the views of moth-ers’ significant others across six countries encompassingthree geographical areas: Northern Europe (UK and theNetherlands), Southern Europe (Greece and Italy) andAsia (China and India). The broader aim was to consider

the extent to which the concept of informed choice mayincorporate different value orientations across cultures.

METHOD

The study used a descriptive cross-sectional designto describe and compare prenatal service providers’(namely obstetricians and gynaecologists) attitudestowards standard invasive prenatal testing.

Sample

Participants comprised 3357 practising obstetricians andgynaecologists from six countries. Recruitment meth-ods varied across countries to suit the lead collabo-rators. In four countries (UK, the Netherlands, Italyand Greece) obstetricians and gynaecologists were ran-domly selected and recruited through national obstetricand gynaecology societies. In two countries (China andIndia), where details of registered health professionalsare not stored on central databases, a convenience sam-ple was recruited, aided by collaborating obstetricianswho compiled the contact details of local practisingobstetricians and gynaecologists. With the exception ofthe Netherlands, 600 obstetricians and gynaecologists ineach country were selected and invited to take part ina postal survey. In the Netherlands, the entire popula-tion of practising obstetricians and gynaecologists wasinvited to take part, totalling 857.

Measures

Parental involvement in prenatal testing decisions

This was assessed by the question shown in Box 1.

Box 1—Question used to assess values attached to parental involvement in prenatal testing decisions

It is now possible to test for many health conditions. How do you think the

following test should be dealt with:

Tests in pregnancy to find out if the baby has a serious condition, for example Down’s

syndrome, thalassaemia, sickle cell anaemia or cystic fibrosis. There are no

treatments in pregnancy for these conditions but the mother can be offered a

termination of pregnancy.

01. All mothers should have these tests

02. It is for the mother and father to decide if the mother has these tests

03. It is for the whole family to decide if the mother has these tests

Copyright 2008 John Wiley & Sons, Ltd. Prenat Diagn 2008; 28: 1238–1244.DOI: 10.1002/pd

1240 A. VAN DEN HEUVEL ET AL.

Box 2—Question to assess perceived importance of test decision reflecting views of mothers’significant others

Imagine there is a new test that can predict whether a baby has a serious condition for which the

mother can be offered a termination of pregnancy. Using the following scale, where 1 means’not

at all important’ and 10 means it is’extremely important’…

How important do you imagine each of the following people think it would be for her to have this

test?

a) partner

b) friends

c) family

d) doctor

e) religious leader/ communityleader

Not at 1 2 3 4 5 6 7 8 9 10 Extremely

all important important

Perceived importance of the test decision reflectingthe views of mothers’ significant others

This was assessed using a five-item scale based on thenormative belief component of the theory of plannedbehaviour (Conner and Norman, 1996) as shown in Box2. On the basis of a principal component analysis onthe five items which suggested a one factor solution(eigenvalue = 2.5), a mean score of responses to thefive items was computed to generate a composite scorefor perceived importance of test decision reflecting theviews of mothers’ significant others. The scale rangedfrom 1 to 10 with higher scores indicating a strongerbelief in the importance of testing reflecting the views ofothers significant to the patient. The inter-item reliabilityof the scale was confirmed by a satisfactory Cronbach’salpha (0.74).

PROCEDURE

The study was approved by a local ethics committee inthe United Kingdom (King’s College London ResearchEthics Committee 05/06-141). Separate ethics approvalwas required in India. This approval was granted bythe ethics committee of the institution of our collab-orator in India (All India Institute of Medical Sci-ences’ ethics committee, New Delhi AA-44/4.5.2007).Questionnaires were translated by a commercial trans-lation agency, back-translated and then proof-read bythe collaborating obstetricians. Translated questionnaireswere sent out along with a prepaid envelope and aprepaid numbered response card to be returned sepa-rately to the researcher indicating whether or not the

questionnaire had been completed. This mechanismenabled the recording of non-responders without jeop-ardising the anonymity of participants. Non-responderswere sent one round of reminders.

Data analysis

Descriptive statistics were used to describe the propor-tions of respondents indicating that undergoing prenataltesting should be a parental choice, a family choice or nochoice (i.e. be undergone by all pregnant women), and todescribe differences by country, age, gender and clinicalarea of work (obstetrics, gynaecology or equal time spentin both). A series of univariate analyses, using chi-squaretests for categorical variables and analysis of variance(ANOVA) for continuous variables, were conducted tocompare preference for parental choice across perceivedimportance of test decision reflecting the views of moth-ers’ significant others, age, gender and clinical area ofwork. Two multinomial logistic regression analyses wereused to identify predictors of preferences for no choiceand family choice, the referent categories, relative tothe non-referent categories, enabling all possible binarylogistic comparisons.

RESULTS

Response rates

1117 questionnaires were returned (29.2%). Responserates per country were: UK, 29.3% (176/600), theNetherlands, 40.4% (331/857), Italy, 42.3% (254/600),



Table 1—Demographic characteristics of the sample percountry

Gender

Clinical area ofwork (% ofrespondents)

CountryAge

Mean M F Obs Gynae Both

Netherlands (331) 48.7 60.4 39.6 23.6 21.2 55.2UK (176) 47.3 54 46 24 24 52Italy (254) 48.3 52.4 47.6 37.8 10.4 51.8Greece (116) 52.5 84.5 15.5 9.6 12.2 78.3India (120) 52.3 52.4 47.6 18.5 4.2 77.3China (116) 44.7 9.5 90.5 52.7 0.9 46.4Total 48.8 52 48 27.8 14.3 57.8

0102030405060708090

100

UK NL IT GR Ind CH

No choice Parental choice Family choice

Figure 1—Values attached to choice in prenatal testing decisions

Greece, 19.3% (116/600), China, 19.3 (116/600), andIndia, 20.5% (120/600). Table 1 presents the demo-graphic characteristics of each sample per country. Over-all, the majority of respondents believed that prenataltesting should reflect a parental choice (76%). A minor-ity of the sample believed that prenatal testing shouldeither reflect a family choice (14.7%) or be undergone byall pregnant women (9.3%). Figure 1 presents a break-down of responses per country.

Univariate analyses

Univariate analyses revealed that age, country, area ofclinical practise and perceived importance of test deci-sion reflecting the views of mothers’ significant otherswere significantly associated with preference for choice.Younger health care professionals were more likely tofavour parental choice as opposed to a family choiceor a preference for all pregnant women to undergotesting [F (2, 1100) = 8.27, p < 0.001], as were par-ticipants who worked in gynaecology only (χ2 = 289,df = 5, p < 0.001). A stronger belief in the importanceof test decision reflecting the views of mothers’ signifi-cant others was significantly associated with a preferencefor parental choice or family choice as opposed to apreference for all pregnant women to undergo testing[F (2, 1068) = 28.04, p < 0.001] Respondents from theNetherlands attached the highest value to parental choiceand respondents from China attached the lowest value.

Table 2—Perceived importance of test decisions reflecting theviews of mothers’ significant others [mean (sd)]

Country Mean sd

Netherlands (NL) 5.88 (1.58)UK 6.04 (1.70)Italy (IT) 5.78 (1.88)Greece (GR) 7.39 (1.82)India (Ind) 6.98 (2.05)China (CH) 7.61 (1.42)Total 6.71 (2.08)

Scale ranged 1–10, high scores representing a stronger belief in theimportance of others in a decision about testing.

Family choice was most highly valued by respondentsfrom China and least by respondents from the Nether-lands. Table 2 presents means and standard deviationsof perceived importance of test decision reflecting theviews of mothers’ significant others, presented by coun-try. No significant associations were found between gen-der and values attached to choice.

Predictor variables

Age, clinical area of work, perceived importance oftest decision reflecting the views of mothers’ significantothers and country were entered into two multinomiallogistic regression analyses. Continuous variables weredivided into quartiles to minimise the number of cellswith zero frequencies. Three variables, namely age; per-ceived importance of test decision reflecting the viewsof mothers’ significant others; and country, significantlydifferentiated between a preference for parental choicecompared with a preference for no choice. One variable,namely country, significantly differentiated between apreference for family choice compared with a prefer-ence for no choice and a preference for parental choice.Table 3 presents the odds ratios and confidence inter-val (CI)’s for each predictor variable. Clinical area ofwork (i.e. obstetrics or gynaecology) did not differenti-ate between groups in any of the comparisons.

DISCUSSION

The findings reported here suggest a professional con-sensus among obstetricians in Northern Europe that pre-natal testing should reflect a parental choice. Conversely,views in Italy, Greece, India and China are more diversewith sizeable minorities believing that there should beno choice and testing should be undergone by all moth-ers or that the whole family should be involved in thedecision regarding testing. This apparent lack of profes-sional agreement is at odds with the universal politicalendorsement of informed choice advocated in all coun-tries included in this survey, arguably with the exceptionof China, where policies that encourage healthy childrenare still in place (Law on Maternal and Infant HealthCare).

The cross-cultural variation observed here reflectscurrent practise as evident in the variation observed in



Table 3—Predictors of preferences for prenatal testing to reflect a parental choice, a family choice or no choice

Parental choice versusno choice

Family choice versusno choice

Parental choiceversus family choice

Predictors (n) OR 95(%) CI p OR 95(%) CI p OR 95(%) CI p

Age<43 (261) 2.64 1.36–5.16 0.004 1.89 0.88–4.04 0.10 1.40 .80–2.45 0.2443–48 (283) 2.33 1.21–4.48 0.01 1.80 0.85–3.82 0.13 1.29 .73–2.29 0.3849–54 (259) 1.41 0.77–2.59 0.26 1.65 0.83–3.31 0.16 0.86 .50–1.48 0.58>54 (249)

Area of workObstetrics (288) 1.54 0.88–2.70 0.13 1.02 0.54–1.95 0.95 1.50 .94–2.41 0.09Gynaecology (150) 0.91 0.43–1.96 0.82 0.91 36–2.31 0.84 1.01 .49–2.07 0.99Equal time in both (614)

Perceived attitudes of others<5.2 (252) 2.25 1.10–4.59 0.03 1.25 0.53–2.93 0.61 1.80 .97–3.33 0.065.2–6.4 (268) 1.48 0.77–2.84 0.24 1.19 .57–2.48 0.65 1.25 .73–2.14 0.426.4–7.6 (271) 0.69 0.38–1.25 0.22 1.03 0.54–1.99 0.93 0.67 .40–1.12 0.13>7.6 (261)

CountryUK (161) 11.88 3.90–36.1 <.001 0.16 .03–.92 0.04 76.17 17.19–337.5 <.001Netherlands(307) 17.99 6.63–48.8 <.001 0.63 .19–2.06 0.45 28.48 12.67–64.1 <.001Italy (246) 2.30 1.09–4.81 0.028 0.39 .17–.90 0.03 5.83 3.12–10.89 <.001Greece (110) 1.11 0.49–2.51 .80 0.80 34–1.88 0.61 1.38 .72–2.65 0.33India (117) 1.88 0.82–4.32 0.14 1.04 .43–2.47 1.04 1.81 .97–3.39 0.06China (111)

written patient information offered to pregnant womenprior to undergoing prenatal testing (Hall et al., 2007;Van den Heuvel et al., 2008), and is consistent withthe cross-cultural variation in attitudes towards patientautonomy among geneticists, revealed by Wertz andFletcher (2004).

While there is little evidence available to draw uponin accounting for our findings, a number of factors mayhave contributed. Fundamental differences in the struc-ture of health care systems, availability of resources, therelatively recent introduction of ethics and profession-alism teaching in medical schools and levels of burdenof disease are likely to account for some of the varia-tion observed in the current studies. It is also possiblethat the universal support for informed choice amongservice providers in the United Kingdom and the Nether-lands can be attributed to a more explicit emphasis oninformed choice in these countries. However, the patternof current and previous findings, which distinguishescountries where parental choice is almost unanimouslysupported from those where attitudes are more hetero-geneous, actually dovetails more closely with the extentto which society’s underlying value orientations are pre-dominantly individualist or collectivist (Hofstede, 1988).The inverse association between attitudes towards choiceand perceived importance of test decisions reflecting theviews of important others lends further support to the lat-ter explanation of the response pattern observed acrosscountries. Further investigation is needed to support this.

Of further interest is the relatively strong support forprenatal testing decisions to involve the whole family,noted among obstetricians in Greece, China and India.This reflects current practise in these countries wherethe patient’s family continues to play a central role

in doctor patient communication and medical decisionmaking (Mystakidou et al., 2002; Cong, 2004).

Health professionals have a responsibility to imple-ment guidelines effectively in practise. So what arethe implications of the lack of professional agreementregarding patient choice in Southern Europe and Asiafor the needs and expectations of service users in thesecountries? Values attached to parental choice in the con-text of prenatal testing among the general populations,assessed in parallel to the current study (Van den Heuvelet al., 2008), follow a similar cross-cultural trend asobserved here. In fact, compared with obstetricians, themagnitude of the cross-country divide in the generalpopulation is greater, with the vast majority of gen-eral populations in Southern Europe and Asia believingthat prenatal testing should be undergone by all preg-nant women. The difference between service providersand service users’ views may be explained in severalways. Differences in responses to questionnaires maynot be related to actual views. For example, health careprofessionals may be more affected by peer expecta-tions. Alternatively, the findings may reflect real dif-ferences. Influenced by the international literature andattendance at international meetings, health profession-als may identify more with their profession and so cometo hold views that reflect their profession as much as,or more than, their culture. Nevertheless, the observedtrend implies that obstetricians are unlikely to under-mine informed decision making in cultures where this ishighly valued.

Regardless of the cause of the cross-cultural variationin values attached to choice and autonomy, documenta-tion of this variation has sparked a debate concerningthe meaning of and need for informed choice and the



extent to which it can be universally applied. This debateechoes recent doubts expressed in the literature sur-rounding the appropriateness and feasibility of absolutenon-directiveness in prenatal diagnosis and screening(Williams, 2006). A first step in this debate is a con-ceptualisation of informed choice that encompasses bothoutcomes and processes. We submit that theoretical andempirical work on autonomy provides such a framework.

Respect for patient autonomy is a highly valuedethical principle in healthcare across many regions of theworld particularly North America and Northern Europe.It may be regarded that, in countries in which decisionmaking involves deferral to others, or in which thepatient’s decision is otherwise influenced, the processmay be ‘autonomy-limiting’. However, such decisionscould be thought of as consistent with autonomy ifautonomy is recognised as the exercise of a choicemade within a social framework with certain socialrelationships. Acting in line with the views of significantothers, or in pursuit of a collective goal, can beconsistent with acting autonomously. This view supportsthe notion that autonomy is better understood as arelational concept that necessarily involves others. Thismight be a matter of cultural variation, such that makingan autonomous decision in one cultural context mightbe quite different to making an autonomous decisionin another cultural context. From this perspective, theboundaries of informed choice could be redefined to takeinto account cultural variations in what it means to makean autonomous decision.

The main strength of the current study is that it is, toour knowledge, the first study to consider cross-culturalvariations in health professionals’ values attached toinformed choice specifically in the context of prenataltesting. There are several limitations to the current study.First, the relatively low response rate may limit thegeneralisability of the findings. Second, only two ques-tions were asked to infer values attached to informedchoice and these were translated into five different lan-guages. Although back-translation was used to maximisethe validity of the translation, translation methods can-not guard completely against the loss of cultural specificconnotations (Flaherty et al., 1988). The response option‘all mothers should have these tests’ is ambiguous. Itcould mean that tests should be mandatory or that itwould be in the interests of mothers to have these tests.Third, the response options did not offer participantsthe opportunity to differentiate between the role of themother and the father in the decision-making process. Inview of these limitations we urge caution in interpretingthese results and suggest that future studies would bene-fit from including a qualitative component to understandmore fully the reasoning behind the responses selected.Finally, the extent to which the attitudinal data reportedhere are predictive of the behaviour of health care pro-fessionals remains uncertain. For example, the measureof perceived importance of test decision reflecting theviews of mothers’ significant others, while well vali-dated in numerous health care contexts (e.g. Armitageand Conner, 2001) has not previously been used in thecurrent context. Caution must therefore be applied tointerpreting these data.

In conclusion, many obstetricians and gynaecologistsare in favour of the use of prenatal testing reflectinga parental choice. However, if the values of healthcare professionals are reflected in their behaviour, thelikelihood that informed choice, as currently conceptu-alised, is realised, may vary across cultures. The findingsreported here suggest the need to re-consider the conceptof informed choice as encompassing a broader culturalvalue orientation than currently is the case.

ETHICS

The study was approved by a local ethics committee inthe United Kingdom (King’s College London ResearchEthics Committee 05/06-141). Separate ethics approvalwas required in India. This approval was granted by theethics committee of the institution of our collaboratorin India (All India Institute of Medical Sciences’ ethicscommittee. New Delhi AA-44/4.5.2007).

ACKNOWLEDGEMENTS

The work reported here was conducted as part of theSpecial Non-Invasive Advances in Fetal and Neona-tal Evaluation (SAFE) Network of Excellence (LSH-CT-2004-503241. The authors acknowledge the supportfrom the European Commission who funded this net-work. The authors would also like to thank Dr Madhu-lika Kabra, Dr Ma Runmei, Dr Bianca Masturzo and DrEva Pajkrt for their contributions in collecting the data.LSC is partially funded by NHS Biomedical ResearchCentre funding.

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Informed choice in prenatal testing: a survey among obstetricians and gynaecologists in Europe and Asia