The quest for the perfect baby: why do Israeli women seek prenatal genetic testing?

Abstract

Since the mid-1990s, the Israeli medical scene has witnessed a real boom in elective prenatal testing for inherited diseases that has spread beyond risk groups to the general Jewish population, especially of Ashkenazi (European) origin. This study tried to identify key social influences involved in the growing range and prevalence of prenatal genetic tests as they emerged from women's own perspective. Twenty-seven women having blood tests for genetic mutations were interviewed at two types of genetic clinics, and re-interviewed after getting test results. The names of 23 women who chose not to have elective tests were obtained from testers, and these non-testers were interviewed for comparison. Women's accounts suggest that elective genetic testing is more acceptable, if not normative, among educated middle class Ashkenazi women, and is more often questioned and refused by lower class Mizrahi women, as well as religious women of any ethnic origin. The key forces that drive women's choice of prenatal genetic diagnosis include the fear of having a sick and/or socially unfit child in an unsupportive environment; strong endorsement of testing by gynaecologists; popular and professional discourse on the common Ashkenazi mutations causing genetic anxiety in this ethnic group (i.e. apprehension of multiple known and unknown dangers hidden in its genetic makeup); and the emerging social pressure for comprehensive prenatal screening as an indispensable part of good motherhood. Many women described the experience of testing as frustrating because of the long wait for results and difficulty of their interpretation and subsequent decision-making. Women who rejected elective tests explained their decision by moral/religious objections to abortion and/or eugenic aspects of prenatal screening, as well as by prohibitive costs and poor understanding of the tests' meaning and implications. Yet, few informants voiced objections to the excessive medicalisation of pregnancy as such; ethno-national motives of reproductive decisions were also uncommon in this group. More critical reflection is clearly needed from both providers and users of elective genetic screening before the more widespread uptake of this practice.