Drawing the Line (the reality of The Eradication)

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My fictional story The Eradication is closer to reality than you might think. Scientists have discovered a genetic mutation that leads to the development of autism. Less than two weeks ago, a study was released that shows a different genetic mutation plus lead exposure (found in everything from toys to vacuum cleaner cords) increases the chances of a child developing ADHD. Genetic testing for cancer risk already exists.

Prenatal screening for the genes that cause autism, ADHD, and cancer remains science fiction, but the possibilities are there with the advent of the Non-Invasive Prenatal Tests (NIPT) that were approved and released a few years ago for chromosomal conditions like Trisomy 21, 13, and 18.

Just last week, the UK announced their intention to include free NIPTs for all pregnant women as part of their National Health Service (NHS). They claim that lives will be saved from miscarriage by avoiding the use of amniocentesis while using NIPT in its place.

From the NIPT fact sheet from the National Coalition for Health Professional Education in Genetics: “An inherent limitation of this approach is that screening only detects 85-95% of fetuses with trisomy 21, and falsely designates 3-6% of pregnancies as “positive” when they are, in fact, unaffected with trisomy 21.” (I wrote about this moral dilemma in What They’re Missing.)

Here’s the headline from The Telegraph (p.s. Down’s syndrome is correct terminology in the UK):

Hundreds of babies could be saved after Down’s Syndrome blood test is approved for NHS

Women will no longer face miscarriage through invasive Down’s Syndrome tests

Um, which babies could be saved? Babies with Down syndrome?

Later in the article: “Introducing NIPT into NHS maternity care means that more women can be safely reassured about the health of their baby without having an invasive test which increases the risk of miscarriage. It also means that more women and their partners will be given information that allows them to make choices about their pregnancy that are best for them.” (Lynn Chitty, Lyn Chitty, professor of genetics and fetal medicine at the UCL Institute of Child Health and Great Ormond Street Hospital and lead for the RAPID NIPT evaluation study.)

quote from UK article
There is your answer. No, the “hundreds of babies saved” are not babies with Down syndrome. Essentially the NHS is coming right out and saying that babies with typical chromosomes are worth every measure of saving from the chance of miscarriage, but the babies identified with Down syndrome or other Trisomy conditions are disposable. That parents should have the ability to make a choice that’s best for them (i.e. to terminate, as is already done in more than 75% of those cases in the UK).

Do you think I knew what was best for me when I stared at Kyle’s ultrasound photo through the uncertainty of his pregnancy? Did I know the joy he would bring to everyone around him? Did I know how much he would be able to learn? Did I know how he would be a valued member of our family? How could I know any of these things before he was born?

I did not have a prenatal diagnosis, and I am thankful for that. Rather, I had a “soft marker” on ultrasound which still resulted in my sitting in a genetic counselor’s office hearing about my “choices.” One of them was an amnio, and the window of opportunity was closing. Herein lies a difference between the US and the UK.

I live in the US. I was told I could not have an amnio between 23 weeks and 36 weeks. Know why? Viability. Because of the miscarriage risk, if I had complications from amnio before 23 weeks then well, the baby dies (acceptable risk??). If I had an amnio with complications after 36 weeks, the baby has a pretty good shot of living. If I had the amnio between 23-36 weeks, there is too much chance for the baby to be born premature with a low survival rate or needing life-saving measures.

It was the miscarriage risk that helped me decide not to have an amnio. Had NIPT been available, I would have taken it, and then I would have continued my pregnancy with a T21 diagnosis.

The guidelines for amnio in the UK don’t seem to have any such gestational requirements. Then there’s this: From the BBC, “Section 1(1)d of the UK’s 1967 Abortion Act allowed termination of a pregnancy at any time if there was a significant risk of the baby being born seriously disabled.” As it stands, Down syndrome is still considered a serious disability, enough to warrant a selective termination up until BIRTH.

Does it look like my son is “seriously disabled?”

quality of life

Even if he had what some might consider a serious disability prenatally, would that preclude him from having the chance to breathe air and change the lives of people around him? It wouldn’t. It shouldn’t.

And so, where do we draw the line? We do everything in our power to save a 23 week old preemie, despite the likelihood of disability, while in the next room a mother can legally abort her 24 week old for any reason under the sun (to make the choice that’s best for her and her partner). Is the line drawn at birth? Not in The Netherlands, where a baby can be euthanized AFTER BIRTH because of a disability.

So when NIPTs are developed to identify genetic conditions other than a Trisomy or other syndrome, where will the line be drawn?

#don'tscreenusout

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Please sign the petition to the United Nations. Go to http://stopdiscriminatingdown.com/en/sign-the-petition/ ‪#‎IAmNotaRisk‬

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About Katie

Katie Bee is the author of for Elysium blog: a site about family, Down syndrome, home, art, and writing.

3 thoughts on “Drawing the Line (the reality of The Eradication)

  1. Pingback: In their own words: the aftermath of Down syndrome abortion | for Elysium

    1. Katie Post author

      Thank you for writing about it too, and for giving us all the opportunity to speak out through your page as well. Knowing parents think, “If we’re testing for it, it must be bad…” is one reason why I keep writing.

      Reply

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