What’s the data about special needs and abortion?

shutterstock_268726070Here at Key Ministry, we think facts matter. As we follow the one who declares himself to be the way, the truth, and the life, we hold ourselves to a standard of truth as well. When it comes to statistics, that means we refuse to regurgitate oft-quoted figures until we can find the source. Steve has already done that with special needs and divorce, and I’m setting out to do the same today with special needs and abortion.

The number we hear often is that 90% of babies with Down syndrome are aborted. But is that true? Not quite.

That figure comes from an article published in 1999[i] based on studies from the US and 11 other countries. The researchers, Mansfield et al, reviewed rates of pregnancy termination following prenatal diagnosis of Down syndrome and four other conditions. The findings? On average, 92% of babies with Down syndrome were aborted when the diagnosis was made early enough in pregnancy for that to be an option. The range was 71% from a small study in France published in 1990 to 100% in four separate studies in the UK (2 studies), France, and New Zealand in 1990, 1982, 1995, and 1992 respectively. The largest study was done in the UK in 1998 and included 4,824 diagnoses of Down syndrome; out of those, 4,438 – or 92% – ended in abortion. The research review included termination rates for four other conditions when diagnosed prenatally: for spina bifida, 64%; for anencephaly, 84%; for Turner syndrome, 72%; and for Klinefelter syndrome, 58%.

But none of that data is the most complete or current, so we shouldn’t repeat the findings without caution. For starters, this only includes decisions made by women who received a prenatal diagnosis for the conditions, a group which only includes a small fraction of all mothers ever pregnant with a baby with the disability. But most pregnant women don’t pursue invasive testing – like amniocentesis – to confirm a prenatal diagnosis for their unborn child. Furthermore, writing from my context in the US, the studies relevant to Down syndrome reviewed from this country were from 1980, 1985, and 1988, so they were outdated before the oft-cited article was even published in 1999.

Based on this study, at best, could we say something like “one study indicates that as many as 90% of unborn babies diagnosed in utero with Down syndrome are aborted?” No. The wording lacks integrity. Why? Because any good researcher (which we who strive for excellence in Christ should become if we aim to share statistics in truth) doesn’t rely on just one study, especially an outdated one rife with other shortcomings. So what do others say?

Thankfully, we can turn to two more reliable studies than the Mansfield paper. First, a more recent research review[ii] by Natoli et al has been published using more recent data, solely from the US. The termination rates following prenatal diagnoses of Down syndrome were still heartbreaking in that paper, but they were lower. The three kinds of studies they analyzed showed the following averages of those rates: 67% in population-based studies, 85% in hospital-based studies, and 50% in anomaly-based studies.

Is this good news? Yes and no. Yes, because fewer abortions are good news. No, because any abortions – especially 50-85% of babies in these studies – are sad news.

Why the different findings for the Natoli study than the Mansfield one? From the conclusion of the study itself,

“Evidence also suggests that termination rates have decreased in recent years, which may reflect progress in medical management for individuals with Down syndrome and advances in educational, social, and financial support for their families. Importantly, the range of termination rates observed across studies suggests that a single summary termination rate may not be applicable to the entire US population and would not adequately address regional and demographic differences among pregnant women.” (emphasis mine)

In other words, not only is the 90% figure not the accurate one to use, there isn’t a golden stat to cite when we’re talking about disability and abortion. But it does appear that rates of abortion of babies with Down syndrome are dropping. Why? In remarks to The Atlantic[iii], Natoli explained further:

“Families have significantly more educational, social, and financial support than they had in the past. For example, from a social standpoint, women of childbearing age are from perhaps the first generation who grew up in an era where individuals with Down syndrome were in their schools or daycare centers — perhaps not the mainstream integration that we see today, but still a level of exposure that was very different than in generations prior. They grew up watching kids with Down syndrome on Sesame Street.”

And I would add they are starting to see more and more people with Down syndrome in their churches. What different might that make?

The next study[iv] approaches the question in a different way. Instead of asking how many babies with Down syndrome have been aborted, these researchers asked how many more children with Down syndrome would be alive in the absence of abortion. They found “an estimated 30% of fetuses with DS were selectively terminated in recent years.” As a comparison point, CDC data indicates that 17.9% of pregnancies end in abortion, including both those with prenatal diagnoses and those without.[v]

So what should we say?

  1. With regard to the first study, STOP using the 90% figure. It’s not accurate, as indicated by more recent US-based research.
  2. In sharing the results of the second study, stop saying “50-85% of babies with Down syndrome are aborted.” That’s not true. Instead, let’s say something like “according to one comprehensive review of existing research, 50-85% of babies with a prenatal diagnosis of Down syndrome were aborted.” When the majority of pregnant women decline invasive testing and those already considering abortion are more likely to pursue prenatal confirmation of a potential diagnosis, we can’t speak like these figures represent the outcomes for all pregnancies of children with Down syndrome.
  3. In talking about the third study, I do think we can say that babies with a prenatal diagnosis of Down syndrome are nearly twice more likely to be aborted than others. That’s tragic.
  4. Finally, we need to know that populated-based research changes over time but the word of God never changes. Yes, let’s use statistics to describe what’s happening in our fallen world. But let’s be mindful that God is our reason for championing life, not any compelling papers in a peer-reviewed journal.

I know this post was more dense than my usual writing, so thank you for bearing with me if you’ve made it this far. In future posts, we’ll look at practical implications. Does the Bible really support a pro-life stance? Historically, how have we devalued the lives of those living with disabilities? How does this relate to disability ministry? What about adoption? And, most importantly, how can the church respond? I hope you’ll join me for those topics!

References:

[i] Mansfield, C., Hopfer, S. and Marteau, T. M. (1999), Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: a systematic literature review. Prenat. Diagn., 19: 808–812

[ii] Natoli, J. L., Ackerman, D. L., McDermott, S. and Edwards, J. G. (2012), Prenatal diagnosis of Down syndrome: a systematic review of termination rates (1995–2011). Prenat. Diagn., 32: 142–153.

[iii] Wolfberg, Adam. 2 Apr 2012. Why Are So Many Babies Still Being Born With Down Syndrome? The Atlantic. http://www.theatlantic.com/health/archive/2012/04/why-so-many-babies-are-still-being-born-with-down-syndrome/254869/

[iv] de Graaf G, Buckley F, Skotko BG. 2015. Estimates of the live births, natural losses, and elective terminations with down syndrome in the United States. Am J Med Genet Part A 167A:756–767.

[v] I derived that figure from the CDC’s research found at http://www.cdc.gov/reproductivehealth/data_stats/, stating that “the abortion ratio was 219 abortions per 1,000 live births.” Dividing 1,219 – the 1,000 pregnancies ending in live births plus the 219 ending in abortion – by 219 – the number of legally induced terminations – results in an abortion rate of 17.9%. This estimated rate isn’t perfect because some of those 219 terminated pregnancies would have ended by other means, like miscarriage or still birth, but it’s the most accurate figure I could find.

In addition to serving as a Key Ministry Church Consultant, Shannon Dingle is a co-founder of the Access Ministry at Providence Baptist Church in Raleigh, NC.

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About Dr. G

Dr. Stephen Grcevich serves as President and Founder of Key Ministry, a non-profit organization providing free training, consultation, resources and support to help churches serve families of children with disabilities. Dr. Grcevich is a graduate of Northeastern Ohio Medical University (NEOMED), trained in General Psychiatry at the Cleveland Clinic Foundation and in Child and Adolescent Psychiatry at University Hospitals of Cleveland/Case Western Reserve University. He is a faculty member in Child and Adolescent Psychiatry at two medical schools, leads a group practice in suburban Cleveland (Family Center by the Falls), and continues to be involved in research evaluating the safety and effectiveness of medications prescribed to children for ADHD, anxiety and depression. He is a past recipient of the Exemplary Psychiatrist Award from the National Alliance on Mental Illness (NAMI). Dr. Grcevich was recently recognized by Sharecare as one of the top ten online influencers in children’s mental health. His blog for Key Ministry, www.church4everychild.org was ranked fourth among the top 100 children's ministry blogs in 2015 by Ministry to Children.
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One Response to What’s the data about special needs and abortion?

  1. Pingback: Disability and abortion: How should the church respond? | Church4EveryChild

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