Understandings of Down's syndrome and their place in the prenatal testing context

INTRODUCTION: There is a growing consensus that decisions about prenatal testing should a) be informed, and b) reflect the individual's attitudes and values. Most research has focused on information and attitudes in relation to the tests but there has been little attention given to these factors in relation to the target condition. AIMS: This thesis is concerned with informed choice in the context of prenatal testing for Down's syndrome. The main aims were to describe the written information that women receive about Down's syndrome prior to prenatal screening, characterise understandings of Down's syndrome that exist independently of the testing context, and identify the relationships between understandings of Down's syndrome, intentions towards using testing and termination, and actual screening choices. METHODS AND RESULTS: Study 1 employed a content analysis of information about Down syndrome contained in 80 prenatal screening leaflets. Information about Down's syndrome was low in quantity (the median number of statements was one and 33% percent of leaflets contained no descriptive information on the nature of the condition). The majority of statements (63%) were rated as negative in tone, (25% were rated as neutral and 19% were rated as positive). 89% of the statements were of a medical, clinical or epidemiological nature and 11% concerned social, educational or psychosocial issues associated with Down's syndrome. Study 2 used Q methodology to characterise understandings of Down's syndrome. 76 people chosen as being likely to represent a diverse range of views Q sorted 50 beliefs about Down's syndrome. Five statistically independent understandings of the condition were extracted using Principal Components Analysis. There was a consensus across participants on the rights of existing people with Down's syndrome to a good quality of life, but there were significant differences in to how respondents believed they personally would cope with, and adjust to an affected child. Some tentative associations between these five understandings and attitudes towards testing and termination were identified. Study 3 employed a self-completion questionnaire in 197 pregnant women to measure attitudes towards Down's syndrome and intentions to test and terminate for the condition. Serum screening uptake was collected later from patient records. Attitudes towards Down's syndrome were significantly associated with intentions to use screening, diagnostic tests, and termination, and also with actual screening uptake (p < 0.05). However, most women accepted screening tests (77% overall) regardless of whether their attitude towards Down's syndrome was favourable or not. Attitudes towards Down's syndrome were most strongly associated with intentions to terminate a pregnancy for the condition. Women who were uncertain about terminating for Down's syndrome had significantly higher levels of ambivalence in their attitudes towards the condition than women whose behavioural intentions were either `yes' to termination or `no' to termination. DISCUSSION: The findings suggest that a) guidelines regarding informed choice are not being met in the case of written information provided about the target condition and b) screening choices might not always be directly informed either by attitudes towards Down's syndrome or towards termination for the condition. Further investigation into the psychological and situational factors associated with testing and termination choices is recommended