Warwick-led study reveals prenatal Down syndrome screens failed to support mothers

Tamar Rutter, a PhD student at the University of Warwick, is the lead author of a new study into the prenatal screening for Down syndrome focusing on the support given to expectant mothers. 

The report, published in the American Journal of Medical Genetics, is the largest UK study of its kind and reveals significant research gaps. 300 mothers of children with Down syndrome were surveyed, being asked to “review the information they received about screening, their experiences of being offered screenings, and receiving screening results or of declining screenings”. 

The research not only “found that many expectant parents received limited support to meaningfully consider whether or not to [undergo] screening”, but also, following prenatal diagnosis, uncovered “the lasting personal impact of the way screening results are communicated to them”, according to Rutter. 

[One mother] was subsequently ‘offered termination’ on four separate occasions

The study highlights how the prenatal screening process for Down syndrome has left many expectant mothers feeling unsupported, with many lacking sufficient information and emotional support. 

One mother described her pregnancy as surrounded by “negativity, doom, and gloom”. With a prenatal screening revealing a high chance for Down syndrome at 13 weeks, she was subsequently “offered termination” on four separate occasions: “The foetal medicine doctor told us our baby would have a poor quality of life and that we should consider the impact on our family. They told us he would be a burden.” 

62% of the mothers surveyed left the prenatal screening process feeling they had received an inadequate amount of information

The study focused on the process of choosing to undergo prenatal screening. 44% of survey respondents reported receiving no information prior to potential screenings, while 37% felt they lacked the opportunity to discuss it with a healthcare professional before making a decision. Despite this, 72% felt there was enough time to make the decision. 

54% said they ‘went along’ with the screening without too much thought, with a minority feeling pressurised to take part. These pressures often took place in the form of negative suggestion, for example professionals describing Down syndrome as a ‘risk’ rather than a ‘probability’. 

The process of receiving results was also scrutinised, with one mother describing the process of receiving results via telephone as being “abandoned” with “no idea where to go next”. 62% of the mothers surveyed left the prenatal screening process feeling they had received an inadequate amount of information about Down syndrome.