The Madness Of “Genetic Screening”

My wife and I have had to make a series of decisions that will, to varying degrees, affect the future of our child: whether to get an ultrasound, how many ultrasounds to get, whether we are going to pursue “natural” childbirth, whether to use the services of an obstetrician or a midwife, etc. However, as we’ve wrestled with these questions, we’ve been certain of one thing: we don’t want to do any genetic testing for our child. The reasons are many, but Kevin over at Wizbang has summarized our thoughts on the matter far, far better than I believe I could:

On both occasions when offered the chance for amnio tests we turned them down. Our decision was simple; if we had found out that we had a child with Downs coming (for example), would we still have the child? Our answer was, ‘yes.’ This obviated the need for genetic testing. Conception and child birth in humans and animals is not a perfect process – there are all manner of miscarriage, defects, and death – but the incidences of things going wrong is statistically very low, and lower with quality prenatal care.
For all the advances in reproductive and neonatal medicine there’s still an element of what I’ll call “the divine” (you may substitute “the mystical,” “the magical,” etc.) in the process. We are closest to God at birth and death, and when we inject ourself into the process we automatically change “the divine” outcome. This is not necessarily a bad thing, plenty of people are saved from heart attacks, etc., it’s merely instructive to note that we’ve changed the outcome that was naturally occurring.
In the process of conception there’s a natural process in action, which for many couples is broken. Modern medicine offers much better odds of overcoming infertility and delivering healthy babies. One thing about medicine and pregnancy worth noting, in my opinion, is that it is possible to get too much information during pregnancy. Prospective parents are full of conflicting emotions as birth approaches and there are all sorts of tests that can signify all sorts of problems (or in many cases just the possibility of problems) for the developing infant.
By and large doctors fail to prepare parents for the ethical dilemmas they could face if prenatal tests reveal issues. Getting news about the possibility of genetic abnormalities can throw a parent, a family, or a marriage, into turmoil which the medical profession doesn’t even try to address. My belief is that unless you know (in advance) what you’d do with the information an amnio test might provide, you’re asking for trouble.
If you don’t know what you’d do if a genetic test showed that you had a child with Down’s (for example) on the way you’d be better off skipping the tests entirely. If you think you know what you’d do, read that Times article again…

The LA Times article in question (WARNING: registration site. Hit BugMeNot for a username and password) tells the horrific story of a woman from Wichita, Kansas who decided to abort her son at 7 months in order to “spare” him the pain of a genetic disorder screening had revealed. It starts out thusly:

The moment is burned forever in her mind: The small exam room, her husband’s ashen face, her sobs as the doctor guided a needle into her womb to kill her son.
It’s been 4 1/2 years, and still Marie Becker can feel Daniel kicking inside her, kicking and kicking as she choked back hysteria — kicking until the drug stopped his heart and she felt only stillness.

How can anyone read that passage and maintain a pro-abortion stance?
What hurts me most about these sorts of stories is just how little faith in God the people in them seem to exhibit. The article continues:

She prayed Daniel would forgive her.
She prayed for forgiveness from God as well. Becker had been taught that abortion was a sin; she wanted so to believe it might also be a blessing. In her seventh month of pregnancy she had learned Daniel had a fatal genetic disorder and his life would be brief and brutal. She wanted to spare him that.

Ms. Becker obviously knew what she was doing was wrong and didn’t believe that God could possibly work in and through the situation. No matter how many times I read similar accounts, I just want to sit down and cry.
As I sit here at my desk staring at the ultrasound of my child, I wonder how anyone could conscience taking the life of one so innocent, so defenseless, no matter what their situation.
More horrendous than Ms. Becker’s story, however, is the story (also in the article) of Katie Plazio:

For Plazio, the heartache began with the unexpected. After a decade of infertility, she was stunned to feel a kick to her ribs as she sat through a meeting in February 2001. She had been dieting for weeks, running five miles a day — and wondering why she still couldn’t squeeze into her pants. She was six months pregnant.
Overjoyed, Plazio and her husband scheduled an amniocentesis. The preliminary results were clean; bursting with excitement, Plazio, then 43, bought a baby blanket dotted with pale blue bunnies. Ten days later, her doctor called with devastating news: More complete genetic tests had determined that their son had Down syndrome.
Plazio had studied special education in college; working with adults with Down syndrome, she had seen their lives as lonely, frustrating, full of hurt. She was not sure she could find joy in raising her son to such a future. She didn’t think she could cope with what she expected would be a lifetime of sadness and struggle.
Giving her son up for adoption seemed even worse — to wake each morning not knowing where he was, imagining him scared and alone. “I could not live with that fear all my life,” Plazio said.
“I don’t want anyone to think that I did this all for Matthew,” she said. “I was not just sparing him problems. I was sparing my daughter, my husband, me and all those who depend on me…. I knew the limits of my family and my marriage. Maybe there are families who can handle it all. Maybe they are better people. But I knew I could not do it.”
In March 2001, a week into her third trimester, she and her husband flew to Tiller’s clinic. They took the bunny blanket and a teddy bear with a big red heart on its chest — a gift to the baby from their daughter, then 11.
Since her abortion, Plazio has suffered such severe panic attacks that she can’t drive even as far as the high school to watch her daughter cheerlead. She has gained 60 pounds as she battles depression. The abortion she sought to preserve her mental health has left her deeply shaken; doctors say she suffers from post-traumatic stress syndrome.
Her mental health, she is convinced, would be even worse had she tried to raise a profoundly disabled son — or had she given him up for adoption.

I believe her actions to be utterly deplorable. Downs is not a life-threatening condition – far from it! The level of indifference and near ruthlessness exhibited in Plazio’s decision just breaks my heart.

8 Comments

  1. I’m sorry, what?
    We did no genetic testing. The only tests we participated in were ultrasounds, which hardly fall under the rubric of “genetic testing”.

  2. Having just gone through this round of stuff again, I feel at least able to comment thusly: Every parental unit (one or two or however many people would be involved in rearing a child) must make their own decisions with the knowledge that they have available. Choosing not to know anything about your pedning child is a decision none the less, and clearly for many people, they use their faith too fall back on should things not turn out as hoped.
    We decided to do the testing because we wanted information. I am not saying we would have ended the pregnancy if things were not so good, but at a minimum, we could begin to figure out what to do. We felt that we would NOT be prepared to deal with such things when it was too late to do anything/plan anything/figure out anything ahead of time.
    Ultimately, it boils down to the words I told my wife when she was in her 8th month and we had to start figuring out the pain management plan and “in case of emergency” stuff: “We can always try again on the baby – I can’t get another chance at you.” This was to be the motto until the baby was actually born, in which case a decision was no longer necessary. It’s the reason I will NOT EVER allow my pregnant wife into a hospital that has a policy of child over mother.
    Now I speak for myself, and not my wife: I do believe in mercy. I do not believe that God pays any more attention to me then anyone else, and I refuse to wait for God to intervene on anything, because, well, that is not how my God works. My God has my back, but isn’t dragging my sorry butt anywhere. So if faced with a decision regarding bringing a child into the world that would be “less then normal”, lots of things need to be considered, not the least of which being the affect on my current child and our ideas for how we want the future to be. Some birth defects can be dealt with, and in fact I passed along one that we are aware of (no drainage ducts) to my son, and he picked up one comepletely on his own (Hypospadia – urethra not centered – surgically corrected last year). He may yet develop my genetic disorder of lacking teeth enamel, though I hope not. In any event, those were not able to be known in advance, but even if they were, they do not create any burdens on our lives that we aren’t already dealing with. There are certain things that can be found that would change things forever, some of them currently without hope. All losses – whether natural or purposely planned – may require therapy to overcome. Pretending that people would be better off bringing into the world and then loosing teh child to a previously known entity is both cruel to the parents and to the child. In fact, not even taking into account the health of the child, a study (http://bmj.bmjjournals.com/cgi/rapidpdf/bmj.38623.532384.55v1 ) has now found that the risk of depression and other side effects are not increased by abortion, i.e those tendancies were already there before the pregnancy.
    Mercy also means how you and yours will be affected by bringing a “less then perfect” child into the world. Say the kid would have Downs – something that CAN BE life shortening and IS very difficult to deal with and MAY cause extra stress and burdens on the child, it is still a struggle, because some people could say it would be worth it. Sure, many who are living it do. But I wonder how many would RECOMMEND their lifestyle, and the impacts on their other children, to others. Being “Worth It” and promoting are very different concepts. It was absolutely “Worth It” to live and work in Portland, OR, whilst my Fiance was in Pittsburgh, PA for a year. I wouldn’t recommend it to anyone, nor would I think I could do it again.
    Finally, I am going to say something that Doug may have not considered: Ultrasounds DO fall under manipulation of “divine outcome” – you learned your child had all it’s fingers and toes, and so on. What if you learned it didn’t? I am not saying YOU would have changed your mind in any way, but someone else might have used that information differently. Sure, people can live and be perfectly productive without limbs, but how about those who never had them in the first place, and have mis-shapen exteriors instead? That is a tough life, and I challenge you to show me anyone who would recommend living it to someone who has the ability to determine the outcome.
    Wow that was long winded…

  3. Andy:
    I have a far longer response/post on the abortion issue cooking, but I think that “Jane Galt’s” summation of the issue pretty much sums up how I feel in re: your comment:

    I get the sense that there’s an underlying belief among a lot of people that it’s somehow better if those babies aren’t born. All too often, in my more radically pro-choice days, I heard people actually arguing that the babies themselves would be better off not being born, since their mother didn’t want them. Say what? Even if my mother hadn’t wanted me, I’d [darn] well rather be alive than dead, and so would pretty much everyone still walking the earth. Abortion is something done for the benefit of the mother, for which the child who will not be born pays the ultimate price. Trying to elide, sugarcoat, or invert this is morally bankrupt. It seems to me not only reasonable, but fundamentally right that society should force women to confront the tragic cost they are asking someone else (even if only a legally hypothetical someone) to pay for their freedom, and evaluate whether the benefit they are gaining is really worth that cost.

    That very well captures my feelings on the issue. Abortion is, purely and simply, a selfish choice, no matter who is making it and when it’s done.

  4. I understand you have a battleship in the works…allow me to show my caravel (yes, been playing civ a little too much tonight…)
    1) Who is asking ANYONE else to do ANYTHING in regards to FREEDOM? All I am asking is for the ability, not the act itself. Believing it should remain legal does not mean I WANT one now, or even ever. I want to retain the right to have one, or at least I would if it were possible. That does not mean I am in any way opposed to measures that would decrease the reasons for wanting one in the first place.
    2) You have yet to answer my challenges laid out in the above, and I trust you will when you fire that 18″ shell over my bow:
    a) Pick a female family member, or very close aquaintance. She is raped, and it just so happens that it was at a very inopportune time, and she is pregnant.
    b) Your wife is pregnant,but develops one of those crazy HOUSE style illnesses where only one is likely to survive the procedure.
    c) Say you have a daughter at some point. And at 16, she got drunk and/or was subjected to subtances beyond her control. She is now pregnant, with no idea who the father may be.
    The 3 above are my biggies. The pro-life movement has excluded me because I believe that some degree of choice is warranted in those situations. Being pro-choice in the above makes me inelligible for right-to-life cookies and merit badge…

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