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Prenatal Testing Decision Making Tied to Women's Aversion to Risk, Ambiguity

NEW YORK (GenomeWeb) – While most pregnant women express a preference for noninvasive prenatal testing for fetal Down syndrome, their attitudes do vary, according to a new study.

Prenatal Down syndrome screening typically occurs between 11 and 14 weeks of gestation, and some pregnant women are then offered invasive testing based on a combination of factors including maternal age, fetal nuchal transparency, and maternal serum levels of certain proteins. Noninvasive prenatal testing, in which cell-free DNA from maternal blood is analyzed, has increasingly become another option.

However, as researchers led by Paris Descartes University' Yves Ville noted, this necessitates a complex decision between a testing approach that has a chance of causing miscarriage but gives full information on chromosomal abnormalities, and a testing approach with no chance of miscarriage, but that gives limited information on chromosomal abnormalities.

In conjunction with the SAFE 21 clinical trial, Ville and his colleagues surveyed pregnant women with a high risk of fetal Down syndrome about NIPT and invasive testing. As they reported today in JAMA Network Open, the researchers found that women fell into one of four clusters based on their varying aversion to ambiguity and risk, but also influenced by their education level and religious beliefs.

"The present study highlights the major role played by risk aversion and ambiguity aversion in shaping attitudes and decision making," Ville and his colleagues wrote.

The researchers recruited 2,436 pregnant women at a high risk of fetal Down syndrome from 57 centers in France to answer their questionnaire and enroll in the SAFE 21 clinical trial. After receiving one-on-one information about the advantages and risks of both invasive testing and NIPT, the women were asked to answer a survey exploring their attitudes toward testing.

Based on their responses to the 23 questions, the researchers assessed the women's views of testing using hierarchical cluster analysis. This uncovered four different clusters.

Women in cluster 1, which included about 10 percent of respondents, valued getting all possible information, considered the risk of invasive testing-linked fetal loss to be acceptable, and preferred invasive testing. Women in cluster 2, about 20 percent of respondents, also valued getting all possible information about their pregnancy and thought the risk of invasive testing-linked fetal loss was acceptable, but had no clear preference for one type of testing over the other.

Meanwhile, women in cluster 3, nearly 55 percent of respondents, valued receiving information about Down syndrome in particular and though they tended to prefer NIPT, they did not reject invasive testing. Lastly, women in cluster 4, about 16 percent of respondents, did not think the risk of invasive testing-linked fetal loss was acceptable and had a clear preference for NIPT.

The researchers also tied various factors to women's attitudes toward testing. For instance, they noted that women with higher nuchal translucency measurements tended to be in cluster 1, while women with lower educational levels tended to be in cluster 2. At the same time, women with higher educational levels tended to be in cluster 3, while women with strong religious beliefs tended to be in cluster 4.

They further noted that the women's later decision-making was in line with the attitudes they expressed. For instance, when the women were later randomized to different testing as part of the trial, women in cluster 4 were more likely to refuse invasive testing, while women in cluster 1 were the least likely to do so.

"While pregnant women have been shown to greatly differ in terms of extent of information seeking, tolerance for uncertainty, and pregnancy risk taking, counseling should involve listening to women's preferences as to what they want to get out of prenatal testing," Ville and his colleagues wrote.