Official figures badly underestimate number of Down Syndrome abortions

We know that the number of Down Syndrome babies who are aborted annually in the UK is shockingly high, but it turns out that the figure given by the Department of Health in Britain is a gross underestimate. The Department of Health (DH) puts the figure at about 700, but the true total is more like 1,100.

This means that the total of 45 Irish women who had abortions in the UK because of a Down Syndrome diagnosis, according to the latest DH report, could be more like 70 or 80.

The 2016 abortion report from DH says that last year 706 babies were aborted because of Down Syndrome. The report itself notes the underestimation. Its own Introduction informs us that there is a large discrepancy between the figures it makes public, and the number reported by the National Down’s Syndrome Cytogenetic Register (NDSCR).

The Introduction states: “A matching exercise was carried out between the NDSCR data and Department of Health notifications for 2011, 2012 and 2013 data. Results from the matching [exercise] suggest that a Department of Health notification was made for about 54% of NDSCR records and that almost half of Ground E notifications are missing.”  (Ground E permits abortion where the baby has a physical or mental abnormality, including Down Syndrome).

Several studies have highlighted the high degree of under-reporting. A recent one from 2015 called ‘Accuracy of reporting abortions with Down syndrome in England and Wales: a data linkage study’, established that, “An estimated 2,240 abortions of fetuses with Down Syndrome occurred in 2011/12; NDSCR estimated 2208 and DH 1100.” Note that this study focuses on a two-year period.

The reasons for the under-reporting are explained in the study.

One is that the abortion might have been recorded under the wrong ground, usually C (physical and mental health of the mother) or as ground E but with no mention of Down Syndrome. Moreover, forms are not always completed or returned. Even when returned, they might not arrive on time for the annual record.

The Department of Health maintains that they have been working with clinics to rectify this under-reporting. “In December 2016 the Department of Health wrote to all Fetal Medicine Units, Antenatal Screening Midwives and administration staff reminding colleagues of doctors’ responsibility to submit HSA4 forms to the relevant Chief Medical Officer. The letter was jointly signed by the Department of Health, Royal College of Obstetricians and Gynaecologists and Maternal and Fetal Health Medicine Society. However, despite some progress being made, it is likely there is still a significant undercount presented in the ground E notification tables in this publication, so overall figures related to ground E notifications should be treated with caution.”

For the same reasons, and as mentioned above, when we consider the figures about abortions of Down Syndrome babies performed on women with addresses from Ireland, it is more likely that the real number is not 45, as the report claims, but could be 70 or 80, a sobering thought.

 

PS.

There is also another reason why all data about legal abortions, not just those on ground E, are underestimated.

The annual reports are based on a snapshot of the records taken some weeks prior to publication. Notifications received after this cut-off date are processed but they are not included in future statistical releases. One of the reasons for this policy of not revising statistics is that “the revisions would be small in scale and therefore of little value“.

Interestingly, a significant number of those late notification are about ground E abortions.  “This number of late ground E forms is disproportional to the total number (around 10% of late forms were for ground E compared to 2% overall), which could be due to the increased awareness around likely under reporting of ground E forms. However, as the table below shows, the inclusion of this information would have resulted in little change in the percentage breakdowns by age group, gestation and grounds to one decimal place. “

Late received records are not included in the frozen dataset because the scale of the effect is not statistically relevant but this contributes to the underestimation of the precise number of Down syndrome babies aborted.

 

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