Prenatal Testing And Abortion Decision Making

The performance of any medical test is predicated on a hypothesis of benefit which defines the way in which the results of the test will lead to actions that help prevent disease or ameliorate its burden. Implicitly, the person whose disease burden is being ameliorated is the person being tested. Although it is everyone's hope that identification of a fetus with a particular condition will lead to prevention or cure of that disease, this is very rarely true today and the only way to prevent the fetus being born with the condition is through termination of the pregnancy.

Religious objections. From the viewpoint of conservative religious positions that object to abortion under all circumstances, the link of prenatal testing and abortion is clear, and offering women this choice is deeply objectionable.

Cost benefit literature. There is another body of literature in which the centrality of abortion decision making to prenatal testing is quite clear—literature that assesses the effectiveness of testing programs by comparing the economic costs of prenatal testing to economic savings. The costs include such items as sample collection, analysis, and results communication; savings include monies not spent on medical care for children who would have been born with disability but instead are not born. One of the major variables in the equation is the minimum number of women who need to choose termination in order for the screening program to be cost-effective, assuming that not all women who test positive will go on to end the pregnancy. Thus, the calculation both acknowledges the autonomous choice involved in prenatal screening programs in the United States and the need for those autonomous choices to lean, in sum, in the direction of pregnancy termination.

However, most literature that discusses the benefits of prenatal testing talks about the reassurance provided about the health of the fetus for the large majority of women— those who test negative—and the chance for women or couples who choose not to terminate to prepare emotionally for the birth of child with a disability. Generally stated last is the enhancement of reproductive choice in the case of a positive test result.

REASSURANCE AND ANXIETY. The issue of reassurance and, conversely, anxiety in relation to prenatal testing has received considerable attention. Women themselves often cite reassurance as a benefit of testing. Much empirical research has focused on the issue of anxiety for that group of women who receive an initial positive result. These data suggest that women's anxiety is raised following a positive result but that, in general, this anxiety is relieved by a negative result. Data suggest that for some women, however, the anxiety persists, along with difficulty believing their fetus is healthy.

Some feminist critics also suggest an irony in which the reassurance provided by testing may be necessary, in great part, due to anxiety raised by the testing itself. In general, these critics claim that the expansion of prenatal testing has radically changed the experience of pregnancy and that while the number of fetal anomalies has, of course, not increased, the perception of risk among pregnant women has increased greatly.

INFORMATION PROVISION. Another aspect of prenatal testing, sometimes cited by theoretical literature and pregnant women as an advantage for those unwilling to terminate a pregnancy, is the opportunity to have time to prepare emotionally for the birth of a child with a disability. However, there are no empirical data demonstrating that advance preparation actually has an effect on adjustment to the birth of a child with a disability. In addition, the majority of women who receive positive results do terminate their pregnancies. Data suggest that close to 90 percent of women terminate following a diagnosis of a chromosomal disorder such as trisomy 21; the rate of termination for NTDs is more variable, reflecting the greater variation in the severity of the detected anomaly (Cragan, Roberts, Edmonds, et al.).

Thus, the most obvious advantage of prenatal testing must remain the ability to terminate a pregnancy which would result in a child with a disability. This suggests that the bifurcated conversation in the United States about prenatal testing—in which cost effectiveness calculations make assumptions which are omitted or contradicted in the clinical literature and most patient education materials— may make it difficult to have a societal conversation about the larger effects of prenatal testing on society.

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