According to studies conducted in North America and in the Western world, informed consent is not being met in the vast majority of cases in prenatal screening.10 In particular, a recent Health Technology Assessment, conducted by Green at al. for the UK’s National Health Service, identified and surveyed 78 studies that have been conducted internationally about the psychosocial implications of prenatal screening. Most of these studies were conducted in the US and the UK, although several are from Canada and other European countries. The overwhelming conclusion drawn from all of this research concerned ‘the inadequacy of current procedures for achieving informed consent’.11
In health care, patients must not only be given information relevant to their decision-making, they must also understand the information that they have been given. Full understanding is not required for informed consent but patients should understand the salient aspects of the proposed procedure and the consequences of proceeding with the intervention or not.19 Studies evaluating women’s knowledge and understanding of prenatal screening overwhelmingly show that women do not understand the testing, including basic facts such as why the test is being done, what conditions are being looked for, what the results mean, and what will (or may) follow after testing.20 These findings are the same both for women who choose to have testing and for those who decline.21 Researchers of one of the most comprehensive studies done on this topic in Canada concluded that despite the high educational level of their study cohort and the existence of a well-organized provincial screening program, there were ‘information gaps overall and in all domains.’22
A contributing factor to this difficulty in comprehension may be that probabilities are very difficult for people to understand. For example, when women are told that they have an increased risk of having a fetus with Down syndrome, some women think this means a) that they have a fetus with Down syndrome23 or b) that their chance of having a child with Down syndrome is 50-50.24
This reaction reflects the difficulty in applying a population statistic at an individual level; after all, a chance of 1 in 250 of having a child with a certain condition is meaningful when considering a group of 250 women, but it does not say anything specific about the child of any particular woman in that group.
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