Undergoing prenatal screening for Down's syndrome: presentation of choice and information in Europe and Asia

Abstract

To date, studies assessing whether the information given to people about screening tests facilitates informed choices have focussed mainly on the UK, US and Australia. The extent to which written information given in other countries facilitates informed choices is not known. The aim of this study is to describe the presentation of choice and information about Down's syndrome in written information about prenatal screening given to pregnant women in five European and two Asian countries. Leaflets were obtained from clinicians in UK, Netherlands, Spain, Italy, Czech Republic, China and India. Two analyses were conducted. First, all relevant text relating to the choice about undergoing screening was extracted and described. Second, each separate piece of information or statement about the condition being screened for was extracted and then coded as either positive, negative or neutral. Only Down's syndrome was included in the analysis since there was relatively little information about other conditions. There was a strong emphasis on choice and the need for discussion about prenatal screening tests in the leaflets from the UK and Netherlands. The leaflet from the UK gave most information about Down's syndrome and the smallest proportion of negative information. By contrast, the Chinese leaflet did not mention choice and gave the most negative information about Down's syndrome. Leaflets from the other countries were more variable. This variation may reflect cultural differences in attitudes to informed choice or a failure to facilitate informed choice in practice. More detailed studies are needed to explore this further.

Decision Making Following a Prenatal Diagnosis of Down Syndrome: An Integrative Review

“…These 2 countries are different in terms of attitudes about individualism and collectivism 36 . Cultures that stress individual contributions to society within a collectivistic standpoint are more likely to have more influence on women's decisions 36 and to provide fewer resources as well as negative information for the family and individuals with disabilities 37 . Moreover, women who choose to continue their pregnancies with DS in these societies may be considered to be responsible for all care concerning their child with DS because they elected to have the child 38…”

Parental duties and prenatal screening: Does an offer of prenatal screening lead women to believe that they are morally compelled to test?

“…Studies in countries where prenatal screening is performed as routine prenatal care show that it is generally expected that women will participate in testing. A comparative study on the offer of prenatal screening showed that choice was mentioned only briefly or not at all in most of the leaflets (Lawson, 2003;Hall et al, 2007;Gottfrejsdó ttir et al, 2009). In these countries, the rates of termination of pregnancy for fetal anomaly following prenatal testing are high (EUROCAT, 2010).…”

Non-Invasive Prenatal Diagnosis Using Cell-Free Fetal DNA Technology: Applications and Implications

“…To this extent, many of the issues raised above are also relevant in the context of national screening programmes. Additional factors to be taken into consideration might include evidence that norms and standard practice may be culturally determined: for example, a comparison of written information provided to those undergoing carrier screening for cystic fibrosis suggested a more positive description of the condition in the US than the UK [58,59]. This suggests that particular care is needed to ensure that key concepts are communicated effectively, particularly as empirical research using vignettes comparing the impact of invasive testing with non-invasive prenatal testing and Down’s syndrome screening suggest that health professionals regard the need for time for reflection and written consent to be less compelling in women undergoing non-invasive prenatal testing or Down’s syndrome screening (with around 20–25% of those questioned regarding less need for the test offer and uptake to be on different days or a signed consent form obtained) [60,61,69].…”