标题：Socioeconomic Barriers to Informed Decisionmaking Regarding Maternal Serum Screening for Down Syndrome: Results of the French National Perinatal Survey of 1998
摘要：Objectives. We sought to evaluate socioeconomic disparities in serum screening for Down syndrome and assess whether such disparities are more likely to reflect limits in access or information or, rather, informed decisionmaking. Methods. A nationally representative sample of 12 869 French women completed interviews after giving birth. Results. We found substantial disparities in the likelihood of (1) women not being offered screening, (2) screening not being offered as a result of late prenatal care, and (3) women not knowing whether or not they had undergone screening. Except in the case of nationality, there was essentially no evidence of differences in refusal of testing. Conclusions. Rather than representing informed decisionmaking, socioeconomic disparities in screening for Down syndrome are mostly due to limits in access or to information. Antenatal screening via measurement in the maternal serum of various analytes that can indicate a high risk of Down syndrome in the fetus has come to play a key role in prenatal testing for Down syndrome. 1– 3 Prenatal testing programs focusing on congenital anomalies are most often advocated and evaluated by public health professionals, principally on the basis of the potential of these programs to reduce rates of congenital anomalies. 4 Ideally, however, the primary goal of prenatal testing programs should be to maximize the opportunity for informed decisionmaking. Thus, while obviously important, the objective of making the most effective and efficient use of the techniques available in order to detect the largest possible number of affected fetuses should ultimately be assigned less importance than women’s exercise of informed choice. It therefore becomes necessary, in the evaluation of prenatal testing programs, to examine not only the correlates of prenatal testing but also the reasons that might preclude its use. In particular, with regard to disparities in testing, it is important to assess the extent to which differences might reflect limits in access or information rather than an exercise of informed choice. In France, prenatal diagnosis of Down syndrome has expanded considerably in recent years from a system essentially based on offering amniocentesis to women 38 years or older to a regulated system of universal access to both ultrasound and maternal serum screening. 5, 6 Ultrasound screening has increased steadily in use since 1996 and is now routinely offered for measurement of nuchal translucency. A January 1997 governmental decree stipulated that serum screening for Down syndrome be proposed to all pregnant women. 7 The French national health insurance program reimburses patients for the costs of antenatal ultrasound and serum screening and also provides amniocentesis coverage for women who, after serum or ultrasound screening, are found to be at high risk (a risk of 1 in 250 or above) of carrying a fetus with Down syndrome. Health care providers are required by law to inform women of the purpose of serum screening and the implications of its results 8 ; they must produce a written statement attesting to the fact that information was provided, and women must give their informed consent for the test to be done. With increasing use of serum screening, it is important to study possible socioeconomic barriers to women making informed decisions about screening. Previous studies have shown socioeconomic disparities in the use of amniocentesis in several countries, including Australia, 9, 10 France, 11, 12 and the United States. 13– 15 In addition, a recent study suggested that knowledge of Down syndrome and screening might vary in women from different ethnic groups. 16 However, in general, little information is available regarding the effects of socioeconomic factors on serum screening. We assessed the role of several socioeconomic factors in determining women’s use of serum screening and, in particular, the extent to which socioeconomic differences in use of screening might reflect limits in access or information as opposed to informed decisionmaking. Specifically, using data from a nationally representative sample of women who gave birth in France in 1998, we examined socioeconomic differences in the following areas: likelihood of screening not being offered, likelihood of screening not being offered owing to late prenatal care, and likelihood of screening being refused. We also assessed whether women knew their screening status (i.e., whether they knew if they had undergone screening). There is no consensus regarding the precise meaning of an informed decision about prenatal testing 4 ; at a minimum, however, women need to be offered the test and know that the offer was made if they are to make an informed choice. Hence, any disparities in the likelihood of the test not being offered or of women not knowing whether the test was offered would reflect limits in access or information rather than informed decisionmaking. On the other hand, differences in rates of test refusal could be due to an exercise of informed choice.
