Because all parents-to-be, when starting trying for a baby, hope their offspring will be as healthy and happy as possible. Because we are human, because we associate good health and happiness with wellbeing and they are surely two of the most important gifts to bestow on anyone. Surely that can't be controversial?
And equally, once that tiny bundle arrives in your arms, you love it unconditionally, and want the very best for your child. It doesn't matter what peaks and troughs there are ahead on the roller coaster of life, you're in it for the long haul and are your child's fiercest advocate. Irrespective of anything. And that shouldn't be controversial either.
So why, when you merge these two broadly acceptable scenarios together, is there SO much controversy created? Why, when there might be a new, earlier ( 8 weeks) and more reliable test for Down's Syndrome, is this viewed as a problem?
I guess one (good) reason is the idea many have that a disability is always a problem. As was (correctly) pointed out to me recently (and as I obviously am acutely aware since I have children with chronic health issues and deal with disability here) having a child with a testable genetic condition does not mean they will suffer. Of course it doesn't, and if you ever think that is the case, you should check out the excellent blog Down's Side Up written by Hayley Goleniowska, an inspirational advocate and campaigner for her daughter and those with Down's Syndrome. And as the Blog "Saving Down's Syndrome" clearly says, times have changed and the prognosis for the majority of kids with Down's has changed.
But for every parent in a position to embrace potential chronic ill health there are those who would struggle hugely, potentially failing to meet that child's needs or their own in the process. And that's just hard luck most of the time. You make a choice to conceive a child and you take what comes, goodness knows having the opportunity to pick a "designer baby" is utterly abhorrent, giving parents a say on gender, personality, eye or hair colour should be prohibited.
But there are two key reasons why I do not think this new test should be controversial.
1) The current situation is unacceptable. Too many healthy babies are aborted whose amniocentesis test incorrectly points to being positive for Down's Syndrome. A friend of mine's mum used to work in a well known local maternity hospital, counselling parents who were in the appalling situation of considering a termination. She knew too well that sometimes babies with no health issues were accidentally labelled as having Down's. Amniocentesis carries a 1% risk of miscarriage (at least) and is not 100% certain. It is also, crucially, far too late in my opinion to be considering a termination. Babies are surviving earlier than ever and the legal gestational age for abortion (24 weeks) really ought to be brought earlier. But parents understandably need time to consider such heart rending decisions.
The new test would happen earlier, give parents-to-be the same choice earlier, and more safely. It might therefore mean that more babies with Down's are aborted, because terminating a pregnancy which has barely begun doesn't have the same level of emotional involvement as ending one half way through.
2) The world is moving on. Science is progressing and increasingly parents-to-be DO have more choices to make. If they want to. What matters is that they really understand that choice, which at present I suspect many don't. (The NHS isn't great at providing that additional supporting information on most things, let's face it, so there is probably a great deal of "catch-up" required.) But no parent-to-be should ever feel guilty about deciding on a termination on health grounds. We live in a free society where individual choice and parental responsibility is expected and respected.
That choice has NOTHING to do with rejecting individuals already born, and absolutely nothing to do with a lack of support for those struggling with disability on any level. You could be a staunch advocate for a child with a genetic health condition and go the extra mile to make sure their future was assured - but still make a decision that you would not actively decide to bring another child into the world with the same diagnosis.
And yet when trying to suggest this I was torn apart recently on social media, as if I was somehow advocating genocide of all children with Down's Syndrome, or suggesting that they didn't have a good quality of life! The reality for children already born is completely irrelevant to my point of view. I accept that offering such a choice to parents is perhaps suggestive of those with Down's Syndrome being undesirable in some way, but that's not at all my point.
I didn't have the screening blood tests with any of my pregnancies - because I would not have made a decision to terminate under any circumstances those tests might have precipitated. As it turned out, I have children with chronic health issues and disability of a different kind, not issues that could have been tested for, and thankfully not situations which are set in stone. But I was offered a screening choice, and turned it down. I'm not sure how impressed I would have been had I known there was such a choice, but I had been denied it.
As an Aunt to a child with profound disability and learning difficulties I have seen the MASSIVE impact this has had on her family over the past thirty+ years. Her parents are retired, yet are full time carers, day and night, for all her bodily needs. They are an utter inspiration and once their child was born would not have had their reality any other way. But had they been given the option before she was born to take the long view and consider whether they were prepared for 50 or so years of full time caring they might have balked at their future, of a life utterly dependent on her full time needs. I know they would have at least appreciated that opportunity to have a choice.
So let's not glorify disability, confuse choice with prejudice, or meeting needs with celebration of difference. Normalising disability is important, removing discrimination essential but accepting that whilst science facilitates those with chronic and profound health issues to live full lives, it also offers future parents a choice. For some parents, being offered a choice is crucial. And as long as that is an informed one I don't have a problem with it at all. And it certainly shouldn't be a cause for controversy.