4
Cultural variation in values attached to informed choice in the context of prenatal diagnosis Ananda van den Heuvel, Theresa M. Marteau* King’s College London, Institute of Psychiatry, Department of Psychology (at Guy’s), Health Psychology Section, 5th Floor, Thomas Guy House, London SE1 9RT, UK KEYWORDS Cultural diversity; Informed choice; Prenatal diagnosis; Values Summary One of the ethical implications of the widespread introduction of non-invasive prenatal diagnosis (NIPD) is that it might undermine the making of informed choices. There is an almost universal agreement among health professionals and policy makers that prenatal testing decisions should reflect informed choices. It is, however, unclear the extent to which this is a universally held value. We present evidence to suggest that although informed choice is highly valued in Western, individualistically orientated countries, it is less highly valued in non-Western, more collectivist countries. This raises questions as to whether it is beneficial e and indeed appropriate e to recommend facilitating informed choices in countries where this is not a dominant value. ª 2008 Elsevier Ltd. All rights reserved. Introduction As technologies develop, making widespread non-invasive prenatal diagnosis (NIPD) feasible, it becomes timely to consider the ethical implications of the impending intro- duction of these new tests. A key ethical principle invari- ably associated with prenatal screening service provision is informed choice. In recent years, informed choice has become a central theme in healthcare provision in general and particularly so in the context of prenatal screening. In the context of the latter, great effort is made to dis- sociate the current use of technology from past eugenics practices. 1 A second reason for the strong emphasis on informed choice in prenatal screening practice lies in the ‘preference-sensitive’ nature of the decision to be made. 2 This growing emphasis on informed choice is also reflected in many national and international guidelines for genetic testing. For example, the National Screening Committee in the UK states that: ‘There is a responsibility to ensure that people who accept an invitation do so on the basis of an informed choice’. 3 At the international level, World Health Organization’s proposed ethical guidelines for prenatal diagnosis states that: ‘Every test shall be offered in such a way that individuals and families are free to refuse or accept according to their wishes and moral beliefs. All testing should be preceded by adequate information about the purpose and possible outcomes of the test and the potential choices that may arise’. 4 Although the introduction of NIPD is likely to result in a radical transformation of diagnostic testing by avoiding the risk of fetal loss, a concern is that it might inadver- tently undermine the making of informed choices. Current * Corresponding author. Tel.: þ44 207 188 2590; fax: þ44 207 188 0195. E-mail address: [email protected] (T.M. Marteau). 1744-165X/$ - see front matter ª 2008 Elsevier Ltd. All rights reserved. doi:10.1016/j.siny.2007.12.010 available at www.sciencedirect.com journal homepage: www.elsevier.com/locate/siny Seminars in Fetal & Neonatal Medicine (2008) 13, 99e102

Cultural variation in values attached to informed choice in the context of prenatal diagnosis

Embed Size (px)

Citation preview

Seminars in Fetal & Neonatal Medicine (2008) 13, 99e102

ava i lab le at www.sc ienced i rec t . com

journa l homepage : www.e lsev ie r . com/ loca te /s iny

Cultural variation in values attached to informedchoice in the context of prenatal diagnosis

Ananda van den Heuvel, Theresa M. Marteau*

King’s College London, Institute of Psychiatry, Department of Psychology (at Guy’s), Health Psychology Section,5th Floor, Thomas Guy House, London SE1 9RT, UK

KEYWORDSCultural diversity;Informed choice;Prenatal diagnosis;Values

* Corresponding author. Tel.: þ44 200195.

E-mail address: Theresa.Marteau@

1744-165X/$ - see front matter ª 200doi:10.1016/j.siny.2007.12.010

Summary One of the ethical implications of the widespread introduction of non-invasiveprenatal diagnosis (NIPD) is that it might undermine the making of informed choices. Thereis an almost universal agreement among health professionals and policy makers that prenataltesting decisions should reflect informed choices. It is, however, unclear the extent to whichthis is a universally held value. We present evidence to suggest that although informed choiceis highly valued in Western, individualistically orientated countries, it is less highly valued innon-Western, more collectivist countries. This raises questions as to whether it is beneficial e

and indeed appropriate e to recommend facilitating informed choices in countries where thisis not a dominant value.ª 2008 Elsevier Ltd. All rights reserved.

Introduction

As technologies develop, making widespread non-invasiveprenatal diagnosis (NIPD) feasible, it becomes timely toconsider the ethical implications of the impending intro-duction of these new tests. A key ethical principle invari-ably associated with prenatal screening service provisionis informed choice. In recent years, informed choice hasbecome a central theme in healthcare provision in generaland particularly so in the context of prenatal screening.In the context of the latter, great effort is made to dis-sociate the current use of technology from past eugenicspractices.1 A second reason for the strong emphasis oninformed choice in prenatal screening practice lies in the

7 188 2590; fax: þ44 207 188

kcl.ac.uk (T.M. Marteau).

8 Elsevier Ltd. All rights reserved

‘preference-sensitive’ nature of the decision to bemade.2 This growing emphasis on informed choice is alsoreflected in many national and international guidelinesfor genetic testing. For example, the National ScreeningCommittee in the UK states that: ‘There is a responsibilityto ensure that people who accept an invitation do so on thebasis of an informed choice’.3

At the international level, World Health Organization’sproposed ethical guidelines for prenatal diagnosis statesthat: ‘Every test shall be offered in such a way thatindividuals and families are free to refuse or acceptaccording to their wishes and moral beliefs. All testingshould be preceded by adequate information about thepurpose and possible outcomes of the test and the potentialchoices that may arise’.4

Although the introduction of NIPD is likely to result ina radical transformation of diagnostic testing by avoidingthe risk of fetal loss, a concern is that it might inadver-tently undermine the making of informed choices. Current

.

100 A. van den Heuvel, T.M. Marteau

invasive tests are usually offered to prospective parents insuch a way that encourages them to consider two adverseconsequences associated with testing: first, the risk of fetalloss inherent in the procedure itself; and second, the possi-bility of detecting a fetus affected by an abnormality. Byremoving the first, adequate consideration of the outcomemight be overlooked, thereby potentially undermining themaking of informed choices. Currently, NIPD is not clinicallyavailable, so to anticipate its impact on informed decisionmaking we must draw on research investigating the frame-work of current clinical practice.

The fact that NIPD, once available, will be implementedon a global scale raises a second ethical issue that concernsthe universality of informed choice. Although the need forhealthcare decisions to be informed is increasingly empha-sized in Western cultures, it is unclear to what extent this isalso true for non-Western societies. There is some evidenceto suggest that the extent to which informed choice isa universally held and applied value is limited. Forexample, a large international survey of geneticists’ viewsdemonstrated wide cross-cultural variability on attitudestowards autonomy.5

This paper addresses two questions:

1. What is the likelihood that the widespread introductionof NIPD will enter services that facilitate informeddecision making?

2. To what extent is informed choice in the context ofprenatal testing a universally held value?

Before we address these questions, it is helpful toconsider the foundation of the principle of informed choicemore carefully, and to discuss why its relevance might varyacross cultures.

Informed choice and culture

An informed choice can be defined as one that is based onrelevant knowledge, is consistent with the decision mak-er’s values and is behaviourally implemented.6 This con-cept is embedded in the principle of autonomy, a broadand dominant Western, individualistic principle that canbe defined as ‘one’s ability to be self-governing, to havethe capacity for independent decision and action’.7 It isprecisely this dominant emphasis on the individualistic na-ture of informed choice that has caused some to arguethat it is not compatible with all cultural and religiousviews.8 Although independent decision making and thepursuit of personal goals is greatly valued in many Westernsocieties, non-Western societies do not necessarily identifywith these values; a fact that is sometimes evident inhealthcare encounters. For example, a recent study sug-gests that patients in Pakistan are more likely to invitetheir physician to make decisions on their behalf, basedon the physician’s best judgement.9 Cultural differencesare often explained as representing different locationson a particular conceptual dimension. Considering theprinciple of autonomy in the light of such value dimen-sions, it shares many properties with a number of them,most notably with the individualistecollectivist dimen-sion.10 In brief, this dimension refers to the extent to which

the ‘self’ is considered completely independent of others,including whether personal needs, desires and goals are pri-oritized in favour of the needs, desires and goals of the groupto which the individual belongs. Following this line of reason-ing, one could argue that the concept of informed choice ismore meaningful to, and compatible with, societies thatare individualistically orientated than those that are morecollectively orientated.

Current prenatal diagnostic testing practiceand informed choice

We turn now to the first question posed in this paper ‘Whatis the likelihood that the introduction of NIPD will enterservices that facilitate informed decision making?’ Thisquestion requires an investigation into current prenatalscreening practices, as these are likely to constitute thegateway for the implementation of new tests. Severalstudies have evaluated written patient information as anindicator of the extent to which prenatal diagnostic testpractices facilitate informed choices. On the whole, thesestudies conclude that, unlike professional guidelines, theextent to which written patient information facilitates themaking of informed choices is limited and varies widelyacross countries. This is evident both in the content ofinformation provided on the condition for which testing isoffered and in the possible outcomes of testing. Withregard to the latter, a recent critical review concludedthat patient leaflets on screening for an array of conditions,including prenatal screening, do not effectively promoteinformed choices beyond enhancing knowledge.11 In termsof the content, an analysis of leaflets on genetic testingoffered in different European countries showed that thebenefits of screening are disproportionately representedcompared with the risks.12 Despite the inclusion of leafletsfrom a range of European countries, this study did not con-duct cross-cultural comparisons. Data from two studies thatdid conduct cross-cultural comparisons of leaflets on prena-tal screening tests observed a marked difference betweenleaflets offered in Northern European and those offered inSouthern European and Asian countries. Leaflets from thelatter countries tended to portray the condition in questionless favourably and placed considerably less emphasis onchoice and the need for discussion in deciding whether toundergo testing.13,14 Although neither of these studies in-cluded an outcome measure to assess the effectiveness ofleaflets to promote informed choices, they challenge theassumption that informed choice is a universally held valueand one that should be endorsed by policy makersinternationally.

Is informed choice in the context of prenataldiagnosis valued?

Individuals vary in the value they assign to being activelyinvolved in healthcare decisions.15 It is therefore not unrea-sonable to suggest that the cross-cultural variation in theextent to which written patient information is likely to fa-cilitate informed choices reflects a variation in valuesattached to choice. Findings from a recent population-

0

10

20

30

40

50

60

70

80

90

100

Country

% o

f resp

on

den

ts

NorthernEuropeSouthernEuropeAsia

UK Netherlands Italy Greece India China

Figure 2 Percentage of respondents believing that knowinglyhaving a child with a serious genetic disorder is socially irrespon-sible to society in the era of prenatal diagnosis (original source:Ref. 5).

Cultural variation in values in the context of prenatal diagnosis 101

based study that we conducted support this hypothesis. Across-cultural comparison assessing values attached tochoice in the context of prenatal screening revealed a sharpdivide between Northern European countries on the onehand and Southern European and Asian countries on theother in the extent to which choice was valued, the patternof which bears a striking resemblance to the pattern seen inthe presentation of prenatal testing in leaflets (unpublisheddata). Compared with respondents from Southern Europeanand Asian countries, respondents from Northern Europeancountries displayed a far more favourable attitude towardsparental choice in prenatal screening decisions. These find-ings are consistent with a cross-cultural study among genet-icists, which investigated the extent to which patientautonomy e the ethical principle underpinning the conceptof informed choice e is supported. This study revealeda fairly similar pattern of cross-cultural variation in atti-tudes towards autonomy. Figs. 1 and 2 display responsesfrom a selection of countries on two of the measures usedin this survey.5

Northern European countries place considerably moreemphasis on patient choice than Asian countries and ealthough to a lesser extent e than Southern Europeancountries.4 Given the almost worldwide political endorse-ment of the principle of informed choice in the contextof genetic and prenatal screening, these findings implythat guidelines do not reflect wider professional viewsand perhaps lay views too. A recent study that comparedattitudes towards genetic screening for thalassaemia inPakistan supports this.16 Attitudes towards the acceptabil-ity of premarital carrier screening were found to varymarkedly among four different social groups comprisinglawyers, medical students, parents of thalassaemic chil-dren and members of parliament (MPs). Policy makerswere found to be least supportive of premarital carrierscreening (37.5%) followed by lawyers (65.3%) and thendoctors (76.8%). Perhaps unsurprisingly, those directly in-volved with the care of children with thalassaemia, i.e.those most affected by genetic disease, were almost

0

10

20

30

40

50

60

70

80

90

100

Country

% o

f resp

on

den

ts

NorthernEurope

SouthernEuropeAsia

UK Netherlands Italy Greece India China

Figure 1 Percentage of respondents believing that a counsel-lor should support a patients’ decision even if he or she disagreeswith that decision (original source: Ref. 5).

unanimously in support of premarital screening (94.4%).The discrepancy between the views of doctors and thoseof policy makers on the one hand and patients on the otheris of interest. Whereas doctors have a responsibility to ad-here to professional laws and guidelines, their personalviews are likely to be elicited during communication withtheir patients. These views might impinge on the deci-sion-making process. Evidence suggests that despite want-ing to be well-informed, patients often report relying ontheir doctors’ opinions in screening decisions.17,18 Theopinion of the healthcare professional might be particularlyinfluential in countries where physicians have more pater-nalistic roles; typically countries that are more collectivelyorientated. Indeed, recent data from a cross-cultural studyconducted across countries in Europe and Asia show somedisparity between health professionals’ attitudes to choicein prenatal screening decisions, the pattern of which is inline with the extent to which countries can be consideredindividualist or collectivist (unpublished data). Interest-ingly, however, compared with service users, health profes-sionals express a much more favourable attitude towardspatient choice on the whole. It remains to be seen whetherthis is a gap that will be narrowed with time or reflectsa fundamental difference between professional and layviews.

Conclusions

The extent to which the guidelines endorsing informedchoice are reflected in practice varies across cultures.This seems to reflect the variation in values attached tochoice, which in turn reflects the extent to which choice ispart of the dominant value orientation of a given society.The evidence presented here raises questions as to whetherit is beneficial and indeed appropriate to recommendfacilitating informed choices in countries where this is notvalued.

Practice point

� Nationally and internationally developed guide-lines may not be applicable to all members of mul-ticultural societies. Perhaps a more individualisticapproach needs to be taken.

Research agenda

� In view of the increasing multicultural society welive in, future research must explore whethersuch cross-cultural variation is also evident amongethnic groups within countries to help guide thedebate on: (1) whether guidelines at nationaland international levels should reflect diversityof cultures both within and across cultures; and(2) the extent to which guidelines could or should

102 A. van den Heuvel, T.M. Marteau

accommodate diverse views in light of scarceresources.

Acknowledgment

The work reported here was conducted as part of theSpecial Non-invasive Advances in Fetal and Neonatal Eval-uation (SAFE) Network of Excellence (LSH-CT-2004-503241).The authors acknowledge the support from the EuropeanCommission, which funded this network.

References

1. Andrews LB, Fullarton JE, Holtzman NA, Motulsky AG. Assessinggenetic risks: implications for health and social policy. Wash-ington DC: National Academy Press; 1994.

2. O’Connor A, legare F, Stacey D. Risk communication in prac-tice: the contribution of decision aids. BMJ 2004;327:736e40.

3. National Screening Committee. Information sheet on antenatalscreening for Downsyndrome.Available at: http://www.nsc.nhs.uk/pdfs/info_sheet_downs.pdf (accessed on 17 December 2007).

4. World Health Organization. Proposed international guidelineson ethical issues in medical genetics and genetic services; 1998.

5. Wertz DC, Fletcher JC. Genetics and ethics in global perspec-tive. Dordrecht: Kluwer Academic Publishers; 2004.

6. Marteau TM, Dormandy E, Michie S. A measure of informedchoice. Health Expect 2001;4:99e108.

7. O’Neill O. Autonomy and trust in bioethics. Cambridge:Cambridge University Press; 2002.

8. Fagan A. Challenging the bioethical application of the autonomyprinciple within multicultural societies. J Appl Philos 2004;21:15e31.

9. Jafarey AM, Farooqi A. Informed choice in the Pakistani milieu:the physicians’ perspective. J Med Ethics 2005;31:93e6.

10. Hofstede GH. Culture, consequences: international differ-ences in work-related values. London: Sage Publications; 1980.

11. Fox R. Informed choice in screening programmes: do leafletshelp? A critical literature review. J Public Health 2006;28(4):309e17.

12. Lewis C, Mehta P, Kent A, Skirton H, Coviello D. An assessmentof written patient information provided at the egentic clinicand relating to genetic testing in seven European countries.Eur J Hum Genet; 2007:1e11.

13. Hall S, Chitty L, Dormandy E, Hollywood A, Wildschut HI.Undergoing prenatal screening for Down’s syndrome: presenta-tion of choice and information in Europe and Asia. Eur J HumGenet 2007;15:563e9.

14. Van den Heuvel A, Hollywood A, Hogg J, et al. Informed choiceto undergo prenatal screening for thalassaemia: a descriptionof written information given to pregnant women in Europeand beyond. Prenat Diagn, submitted for publication.

15. Degner LF, Kristjanson LJ, Bowman D, et al. Information needsand decisional preferences in women with breast cancer. J AmMed Assoc 1997;277:1485e92.

16. Gilani AS, Jadoon AS, Qaiser R, et al. Attitudes towards geneticdiagnosis in Pakistan: a survey of medical and legal communi-ties and parents of thalassemic children. Community Genet2007;10:140e6.

17. Beaver K, Jones D, Susnerwala S, et al. Exploring the decision-making preferences of people with colorectal cancer. HealthExpect 2005;8:103e13.

18. Mazur DJ, Hickam DH, Mazur MD, Mazur MD. The role ofdoctor’s opinion in shared decision making: what does shareddecision making really mean when considering invasivemedical procedures? Health Expect 2005;8:97e102.