Post by Michael James Stone on Jul 8, 2012 11:57:20 GMT -8
July 6, 2012
What You Need to Know About the Hidden Benefits (and Costs) of New Prenatal Tests
Significant scientific leaps offer more information—and decisions—to expecting mothers.
Sarah Eekhoff Zylstra
At first blush, the news that scientists can diagnose thousands of genetic disorders in an unborn human baby looks incredible.
Using a blood sample from the mother and saliva from the father, scientists at the University of Washington mapped out the entire genome of a child while he was in the womb. The discovery, which was published June 6 in Science Translational Medicine, makes it possible to spot disorders from sickle cell disease to cystic fibrosis to Down syndrome in the second trimester of pregnancy.
Best of all, at least for those of us who shiver at the thought of an amniocentesis, is that it’s noninvasive.
About 10 percent of the free-floating DNA in a mother’s blood belongs to her baby, and by comparing her blood with her own and the father’s DNA, scientists can pinpoint which DNA belongs to the baby. From there, they can sequence the child’s entire DNA code.
Or at least, they can get pretty close. Their accuracy rate was about 98 percent in the infant boy they tested.
And I find myself wishing this test had been around when I was having my kids. How great would it be to know for sure that your baby is okay? You could breathe more easily, knowing that your infant would be born whole and healthy.
And if he’s not, well, then at least you know. You can be emotionally prepared for his birth. You could choose a C-section if that was warranted, or line up services for him, or join a support group.
Or abort him.
That’s the rub, said Gene Rudd, president of the Christian Medical and Dental Associations.
It’s hard to imagine this test wouldn’t be the instigation of selective abortions, since many women with prenatal diagnoses of Down syndrome currently abort, he said.
“It’s search and destroy that we do that now with Downs,” he said. “And to what benefit do we do that? If we look at the statistics or surveys that come from families that have raised a Downs individual, 97 percent said it was rewarding.”
It’s a life worth living, and many see that, says Amy Julia Becker, who has written extensively about her daughter with Down syndrome. Heart conditions and respiratory troubles often suffered by those with Down syndrome can be treated, life expectancy has risen from 25 to 60, and by all accounts, raising a son or daughter with Down syndrome can be a wonderful gift. The numbers are tricky, but Becker says that about 70 percent of babies prenatally diagnosed with Down syndrome are aborted.
Becker even declined extensive prenatal testing in subsequent pregnancies despite an elevated risk of the syndrome, saying she would welcome another child with Down syndrome.
But not everyone thinks the way she does.
“Ultimately, the problem is that we have a society that says it’s okay to kill unborn babies,” Rudd told me. “If that weren’t permissible, this information wouldn’t be misused.”
Prenatal testing in a country with legal abortion lets parents decide if that child is “good enough” to live, he said. But as imperfect, capricious, sinful beings, how do we figure we’re smart enough, or good enough, to judge anybody else’s shot at life?
“Who are we to say that cystic fibrosis is such an overwhelmingly terrible disease that they shouldn’t be allowed to live?” Rudd said. “Do we say that about a one-year-old who is diagnosed? What’s different about a younger child?”
But now the test is there. The information has been released, and we adore information.
I understand that. I like information, too. It helps me to make better decisions and to map out my plans.
The problem comes when I start depending on information—more, faster, better information all the time—to try to control my world. The data I pile up props up the illusion that I can adjust the settings on life, that I can reason my way around God’s plan. I begin to think the choices that I make are better-informed than what God has for me.
After all, if I know, then do I need God? Didn’t humanity stumble and trip over this quest for information?
Aren’t we still stumbling over it?
Just because information is new and different doesn’t make it an advance, said William White, a practicing obstetrician in Franklin Park, Illinois.
If an early diagnosis could help the child, White would be all for it, depending on the number of false positives and severity of the risks, he said. “But at this point we don’t have anything to offer a baby diagnosed with genetic disease in pregnancy.”
So the question is more theological and philosophical than practical, Rudd said. Are we the sum of our genes?
Of course not.
Of course there is more to us than our height and hair color, our asthma or diabetes or autism. Our genes don’t begin to reveal the depth of love that we’re capable of, the ways we bring joy to others, the unique ways that we can serve.
It’s not that the test is bad. To be able to map a child’s DNA while they’re still in the womb is fascinating.
But so is the fact that many mothers believe that it would be worse to live in an imperfect body than not to live at all.
Sarah Eekhoff Zylstra regularly writes news stories for Christianity Today, including a piece on “The New Pro-Life Surge.”
posted by Sarah Pulliam Bailey | Comments (9)
Related Tags: abortion, disability, life ethics, pregnancy
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Prenatal testing showed that my daughter had Down's Syndrome. I was surprised by my strong emotional reaction to the result. I broke down crying in the office and it took me a good hour to compose myself. I was doing everything I could think of to be healthy. How did this happen?
As we went for more and more testing the results were inconclusive. People counseled us to get as many tests as possible. Exhausted, we stopped. We decided the test results wouldn't change our minds on abortion. We wanted to keep our daughter. Physically she looked as healthy as we could tell. Many months later she was born peacefully in my bathtub--with no hint of Down's Syndrome.
All of the stress and anxiety of the test results made me wonder how many parents inadvertently aborted babies with no illness.
Posted By: MelissaT | July 6, 2012 10:15 AM
Hi Sarah,
Even with accuracies of 24 out of 25, for every 1 million tests there will be 40,000 mistakes. Selective breeding has just jumped ahead in terms of lab time(so to speak).
There is a "perfect DNA", Adam & Eve had it, perfect for what God called Adam. Genesis records the "sons of God(angels)", came into the daughters of men, corrupting our gene pool, and according to Genesis, "all flesh" was corrupted by these that left their 1st estate. When God made the prophetic statement to the Serpent in the garden "the seed of the woman will crush you're seed's head", corrupting "woman's seed" would have been foremost priority to thwart this. This I think is why Noah had the qualifier "perfect in his generations", which kinda sounds like "uncorrupted DNA" in simplistic layman terms...God brought the flood to sterilize this corruption. If we read the Genesis account keeping this aspect in mind, the fact that it was Canaan, Hams son that was cursed by Noah, makes more sense. 8 souls came across the flood, we can assume Noah, his wife & the 3 sons had good DNA, but what about the sons wives? If Ham's wife had corrupted DNA, this would explain why God needed to "rub out" the list of wicked groups in the land given to Abraham's posterity...They are all descendants of Ham & his wife.
The problem from our side of the flood, selectively breeding out "bad DNA", is the corrupted DNA produced what some would consider desirable traits, like men of renown, mighty men. We could be working towards isolating a strain of "mighty men" which will not BTW be good for the rest of us.
I know allot of You gals consider me misogynous from some of my comments, but the opposite is actually true. You see if we believe the Bible we find that old serpent making women the battle ground. 1st Eve, then the daughters of men. Satan knows how well mothers have more influence on their childrens developing years. He knows how well husbands will compromise their walk with God, to "respect his wives beliefs". I only need point you to the account of that wisest man Solomon's downfall in 1Kings11:1-11(all ones). From Ahab being controlled by Jezebel, to the woman representing the world's church in Revelation 17, which even John looked upon "with great admiration"(Mystery Babylon Mother of harlots), The battle ground for Satan has and continues to be with women.
Proverbs begins with a description of Satan's arsenal, and headquarters set up in full effect on the battle field. A good part of the book warns against being caught behind enemy lines. Proverbs ends with a description of a well fortified stronghold for Godly men. If we look closely at the virtuous woman, she seems actually to have much more going on than today's "liberated ones"...doesn't she have it all? Career, family, makes her own schedule...Even her husband praises her!
Posted By: Theophile | July 6, 2012 11:50 AM
Theophile - I've heard the argument that the men of renown were nephilim but I've never heard it argued that Satan would have wanted to corrupt the bloodline because of God's curse. Interesting.
A while back I had a fun theological conversation with this older gentleman (that I'll likely never see again on this side of heaven) and he brought up a thought - that the Bible clearly states that there are some demons (fallen angels) that are already chained up; yet the Bible shows that being a future event as well. His thoughts were that the ones who were chained up where the ones who were able to reproduce with women. A specific type of angel.
Me? I'm not convinced that angels can reproduce with a woman. Growing up when I read those passages I took them to mean that it was Godly men marrying ungodly women (Samson and Delilah stories). The first time I heard this theory I thought the man was wacko but then found many more people believe it as Biblical fact. Jesus words in Matthew 22:23-33 Luke 20:27-40 and Mark 12:18-27 lead me to not fully accept it as theological proof. His words don't preclude that angels can't reproduce; but the words don't support it either.
Back to the article. When my mom was pregnant with me she was older than most (age 40) which was highly unusual 30 years ago. She was told that she had a 50% of miscarrying me, 40% chance that I would have Down's and a 30% of some sort of other mental or physical defect - all due to her age. She also should have not been able to have gotten pregnant in the first place (probably less than a 1% chance, honestly). The doctor recommended the test for Down's but she declined because she knew that people generally only got the test if they thought abortion was an option. But because of those staggering odds against her she spent her entire pregnancy in fear that something would be wrong with. I remember her commenting several times when I was growing up that she wished she'd gotten the test so that she would have had the peace of mind of knowing.
Posted By: Leslie | July 6, 2012 1:26 PM
Sarah writes, "Heart conditions and respiratory troubles often suffered by those with Down syndrome can be treated, life expectancy has risen from 25 to 60, and by all accounts, raising a son or daughter with Down syndrome can be a wonderful gift."
Here's a dilemma for the those who call themselves by the name of Christ: these people with Down syndrome, as well as all those thousands diagnosed with autism over the past 20 years or so, are now reaching adulthood, and even late adulthood. Their mothers, whose joy it has been to care for them all these years, are at the same time reaching decrepitude. They are wondering what will become of their adult children with disabilities when they, the caregivers, die.
Well, what?
Posted By: Rahab | July 6, 2012 1:38 PM
Rahab raises a good point. A pastor fostering his building campaign encouraged us to list our treasures, and consider leaving them to his church. The only treasure I'll be leaving in this world is my disabled child. Do you think the church will want him? I do worry about who will advocate for him and care for him when I cannot, due to my own disability or death. When a close friend's special needs child passed, she actually admitted her feelings of relief, knowing that her precious child was 'safe in death.' I'd be shocked if Ms. Zylstra could write with such a cavalier tone if her own children were to be dependent all of their lives.
Posted By: Dianne A | July 6, 2012 4:44 PM
@dianne A
I don't think Zylstra's tone was at all "cavalier". As for what we do with them - since the Church (that is, the entire body - not that individuals don't help!) hasn't traditionally done a good job of taking care of those that need care, the government has stepped in. Those that aren't able to take care of themselves will be placed into homes of one form or another, as suits their nature.
While I was growing up, one of my friends' mother ran one such home, for those that were almost able to take care of themselves (most had jobs). As an adult, one of my friends is employed at a facility that provides non-medical care for those that are unable to function in general society (but don't have the ability to function in society). That's likely what will happen to those that cannot function, though the more services like that are cut the less help they can get.
Personally, I'm against no-cause prenatal DNA testing (though I can't have children of my own, and testing if an abnormality is detected makes sense to me). As a person with a plurality of things that are considered/could be birth defects (ranging from the "wait, not everyone is like that?" to "I could have died!"), I worry that I would have been aborted had my parents known - and while it might just be my pride talking, I like to think that my life has been worthwhile.
Posted By: Just Karen | July 6, 2012 7:02 PM
@ Leslie
In Jude the book of Enoch is quoted, referring the quote to Enoch. Have You read Enoch?
I heard a Jewish fable that when God condemned & chained these angels, He also decided the rest of the angels were "broken", and needed "fixed", so this don't happen again. The rebellion/war in heaven according to this fable, was due to Satan & his follower angels desire to not be fixed.
Enoch is a little hard to take at first, and in my opinion it was not included in the Biblical canon, for naming names(angels), and having an official calendar that wasn't Julian. I mention Enoch because it goes into preflood detail, and it was considered scripture by the 1st century church.
See the idea the "sons of God" was reference to Seth's offspring, and the "daughters of men", Cain's offspring, is a logic fail if you sit down and work it out. If the daughters of men means Cain's offspring, then what did they call Seth's female offspring? Not only that it ignores Job's reference to Satan among the son's of God gathered there with God, as a reference to angels.
Posted By: Theophile | July 6, 2012 9:49 PM
Are those who are not perfect a burden to society? If you think they are I strongly suggest you type in "Gianna Jessen Abortion Survivor in Australia (full)" in Youtube - for what she says is correct - those who are born with defects are blessings to us and it is our loss if we abort them - not His/God's (for they will always be safe in His hands in heaven). It is through the weak God works and great lessons can be learnt. It is to our detriment if we wipe out the "in-perfect" in societies eyes.
Posted By: Ann | July 7, 2012 8:25 AM
@ann
From one standpoint or another, just about everyone is a burden on society. For most people, it's very difficult to see things "from the other point of view", and ever harder to see how their long-term decisions have effects on those around them.
Posted By: Just Karen | July 7, 2012 3:23 PM