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Undergoing Prenatal Screening for Down's Syndrome European Journal of Human Genetics (2007) 15, 563–569 & 2007 Nature Publishing Group All rights reserved 1018-4813/07 $30.00 www.nature.com/ejhg ARTICLE Undergoing prenatal screening for Down’s syndrome: presentation of choice and information in Europe and Asia Sue Hall1, Lyn Chitty2, Elizabeth Dormandy1, Amelia Hollywood1, Hajo IJ Wildschut3, Albert Fortuny4, Bianca Masturzo5,Ji´ı Sˇantavy´6, Madhulika Kabra7, Runmei Ma8 and Theresa M Marteau*,1 1King’s College London, Institute of Psychiatry, Department of Psychology (at Guy’s), Health Psychology Section, London, UK; 2Clinical & Molecular Genetics, Institute of Child Health and UCLH, London, UK; 3Department of Obstetrics and Gynecology, Erasmus University Medical Centre, Rotterdam, The Netherlands; 4Department of Obstetrics & Gynaecology, Prenatal diagnosis Unit, Hospital Clinic, University of Barcelona, Barcelona, Spain; 5Department of Obstetrics and Gynaecology, Prenatal Diagnosis Unit, Sant’Anna Hospital, Turin, Italy; 6Department of Medical Genetics & Fetal Medicine, University Hospital, Olomouc, Czech Republic; 7Genetics Subdivision, Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India; 8Department of Obstetrics and Gynaecology, 1st Affiliated Hospital of Kunming Medical College, Yunnan, China 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. European Journal of Human Genetics (2007) 15, 563–569. doi:10.1038/sj.ejhg.5201790; published online 21 February 2007 Keywords: Down’s syndrome; prenatal diagnosis; informed choice; patient education Introduction *Correspondence: Professor TM Marteau, King’s College London, IOP, Department of Psychology (at Guy’s), Health Psychology Section, 5th Choice is highly valued in most societies and increasingly Floor, Thomas Guy House, London SE1 9RT, UK. features in the provision of health care in developed Tel: þ 44 207 188 2590; Fax: þ 44 207 188 0195; countries, reflecting broader political changes in the E-mail: [email protected] Received 11 October 2006; revised 9 January 2007; accepted 11 January growing power of the consumer as well as the erosion of 2007; published online 21 February 2007 professionals’ power. The need for such choices to be Information and choice in Europe and Asia S Hall et al 564 informed is also increasingly emphasised. This is particu- prenatal screening or the contact details of a colleague who larly evident in the context of genetic counselling, with a might be able to provide such information. We received summary of 51 national and international guidelines for just one relevant leaflet each from the Czech Republic, genetic counselling emphasising the importance of patient India, China and Spain. Since we received two from Italy, autonomy and non-directive information giving in this the Netherlands and the UK, we selected the leaflet for context (http://www.eurogentest.org/web/info/public/unit3/ national distribution from the UK, and the leaflets, which guidelineswp12.xhtml accessed 02.10.2006). focussed more strongly on screening for Down’s syndrome Leaflets can be an important source of information for (rather than prenatal diagnosis or genetic testing) from people offered prenatal screening tests. In order to make Italy and the Netherlands. Details of the leaflets are given informed choices about whether or not to undergo prenatal in Table 1. screening, these need to make parents aware that they have a choice and to include accurate and balanced information Analysis about the condition for which screening is being offered. The number of sentences in each leaflet are shown in However, the quality of written information given to those Table 1 (not including titles, headings, and pictures). offered a variety of screening tests is often poor. The Leaflets not in English were translated by a commercial emphasis is often upon encouraging people to undergo translation agency using qualified translators. Two aspects screening rather than facilitating informed choices.1 For of the leaflets were analysed. First, all relevant text relating example, an analysis of leaflets about neonatal testing from to choice to undergo prenatal screening tests was extracted. the UK, USA and Australia found that few facilitated This is presented in Table 2 and is described narratively. informed choice:2 although the majority informed parents Second, each separate piece of information or statement of the benefits of screening, few mentioned that under- about the condition for which screening was being going such tests was a parental choice. conducted was extracted and then coded as either positive, Two studies which critically evaluated leaflets given to negative or neutral. Only Down’s syndrome was included pregnant women in the UK prior to undergoing serum in the analysis since there was relatively little information screening concluded that the quality of the leaflets was about other conditions. Information included the nature generally poor.3,4 Bryant et al3 described written information of Down’s syndrome, its symptoms, treatment, quality of women were given about Down’s syndrome. About a fifth of life and life expectancy for individuals with the condition. the 80 leaflets analysed gave no information about the The classification used in the current study was based on condition at all. Those that did provide such information the criteria used in earlier studies which described written provided negative information about Down’s syndrome. information about the condition for which screening was Perceptions of the severity of a condition are important in being conducted in prenatal screening leaflets.3,7 Examples the decision to terminate a foetus with an anomaly.5 Given of positive information were: ‘some people with Down’s that the information provided appears to influence these syndrome enjoy good health’ and ‘most people with decisions,6 the presentation of information about a condi- Down’s syndrome live to be over 50 years of age, some tion is a key component of facilitating informed choice. live to be over 70’. Examples of negative information were: To date, studies evaluating the extent to which the ‘severe mental handicap (IQo50) will result in most cases’ information given to people about screening programmes and ‘Down’s syndrome is the single most common cause of facilitates informed choices have focussed on the UK, US mental disorder’. Examples of neutral information are: and Australia.2,3,4,7 The extent to which written informa- ‘there is no such thing as a typical person with Down’s tion for people offered screening is likely to facilitate syndrome’ and ‘people vary’. Information about basic informed choice in other countries is not known. The aim genetics and the risk of having a child with the condition of this study is to describe the presentation of choice and were excluded. Each piece of information was coded information about Down’s syndrome in written informa- independently by two coders (SH and AH). Agreement tion given to pregnant women about prenatal screening in was good (97%, 57/59). Both disagreements were resolved Europe and Asia. The seven countries studied are: UK, the by discussion. Netherlands, Italy, Spain, Czech Republic, China and India. These countries were selected from those participating in the SAFE Network of Excellence (http://safenoe.org/cocoon/ safeorg) and chosen to represent Northern, Southern and Results Eastern Europe, and Asia. With the exception of the leaflet from the UK, which was produced by the UK National Screening Committee for Methods national distribution, all leaflets were produced and The leaflets distributed by a single centre. Some leaflets focussed We contacted participants in the SAFE network of excel- entirely on prenatal screening for Down’s syndrome (e.g. lence to ask them to provide written information on Czech Republic) whilst others included only a sub-section European Journal of Human Genetics Information and choice in Europe and Asia S Hall et al 565
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