Is informed choice in prenatal testing universally valued? A population‐based survey in Europe and Asia

Abstract

Objective Informed choice has become an integral part of healthcare provision. We investigated the extent to which informed choice in the context of prenatal testing is universally valued. Design The value attached to parental choice in prenatal testing and the perceived importance of significant others’ views when making test decisions were assessed in a cross‐sectional, descriptive study. Sample and setting Male and female participants from general population samples in six countries: the UK (n = 210), the Netherlands (n = 197), Italy (n = 200), Greece (n = 200), China (n = 200) and India (n = 199). Methods The questionnaires assessed values attached to parental involvement and the perceived importance of the views of significant others when making prenatal test decisions. Main outcome measures Attitudes towards parental choice and attitudes towards the importance of others’ views were analysed by age, gender and education using Chi‐squared tests, Analysis of Variances and multiple logistic regression. Results The majority of respondents from Northern European countries believed that undergoing prenatal tests should reflect parental choice. Conversely, only a minority of respondents from Southern European and Asian countries advocated parental choice, with most expressing the belief that all pregnant women should have the procedure. The perceived importance of significant others’ views when making test decisions also varied across countries: those in favour of parental choice perceived others’ views as less important in the test decision. A preference for prenatal testing decisions to reflect an informed choice was predicted by (i) country and (ii) the perceived importance of significant others’ views. Education, age and gender did not predict decisions. Conclusion The implications of these findings for policy and practice depend upon whether placing a low value on parental choice, but a high value on the others’ views regarding prenatal testing is considered an informed choice. Further research is needed to determine whether cultural variation in values remains significant in a multicultural society.

Preferences for prenatal tests for Down syndrome: an international comparison of the views of pregnant women and health professionals

“…Previous research has shown variation in women's views on prenatal testing between countries with respondents from Northern European countries more likely to value parental choice in prenatal testing than their counterparts in Southern Europe and Asia. 31 Variation in women's preferences between countries raises the question of whether differences exist between cultural groups within countries. There is some evidence suggesting ethnic minority groups in Western countries differ in how they view and use prenatal screening and testing.…”

Antenatal screening for haemoglobinopathies in primary care: a cohort study and cluster randomised trial to inform a simulation model. The Screening for Haemoglobinopathies in First Trimester (SHIFT) trial

“…An alternative viewpoint is that women who act in line with the values of significant others, such as GPs, can exercise an informed choice if the individual 'chooses' to act in line with the attitudes of significant others. 128 General practitioners had positive attitudes towards antenatal SCT screening, as they believed in the benefits of early diagnosis in facilitating timely choice for pregnant women, having seen the effect that sickle cell disease had on their patients. They expressed the importance of educating patients about these conditions, particularly those at risk.…”

En Belgique francophone: philosophie du calcul du risque pour la trisomie 21 et informations aux futurs parents

“…Deux nouvelles études semblent montrer que certaines familles ne sont pas particulièrement demandeuses de pouvoir décisionnaire, du moins tel qu'il leur est proposé actuellement. Si ce concept se confirme, il devra être pris en compte [17].…”