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February 26, 2010

Eliminating Suffering or Eliminating People?

When genetic testing threatens our common humanity.

Amy Julia Becker

Imagine sitting in a doctor's office and receiving this news:

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Good morning, Mrs. Santos. I have the results of the screening test you had last week, 12 weeks into your pregnancy. The test indicates a high likelihood that your baby will be a typically developing child, and I want to make sure you understand the implications of this diagnosis. Typically developing children are at risk for a number of physical, emotional, and mental complications throughout their lives.

Although the risks are many, I will mention a few of the most prevalent. Your child has a 30 percent risk of obesity, an 8 percent risk of diabetes, and a 10 percent risk of clinical depression. Each of these factors can result in premature death. One in 166 children in the United States develops autism, and one in 500 dies within the first few months of life from Sudden Infant Death Syndrome.

In addition to the potential physical and mental problems, I want to make sure you've considered the financial costs associated with a typically developing child. Do you think you can afford to raise this child, given the current economic environment, rising health care costs, and the rising cost of higher education?

The decision regarding this pregnancy is entirely up to you. I just want to make sure you have the information you deserve, based on the test results.

Advances in technology are offering women more information about their pregnancy than ever before. Marilynn Marchione, of the Associated Press, reported last week on the increased use of genetic screening to “curb genetic diseases.” Those she interviewed see genetic screening as positive, a means to ensure that “some of mankind’s most devastating inherited diseases” will continue to decline.

Medical information can be useful in making decisions about trying to conceive children biologically, and even about how best to care for children once they are born. But when it comes to genetic screening, using medical information to eliminate disease often means using such information to eliminate life.

Genetic screening is available at three different points during pregnancy. First, before conception, a couple who is considering having children can be genetically screened to understand the risk of passing along diseases such as cystic fibrosis, Tay-Sachs, Huntington’s, and a variety of lesser-known conditions. But knowing that you are a carrier does not guarantee that your child will inherit the disease. In the case of cystic fibrosis, for instance, even if both parents are carriers, there is a 25 percent chance that their child will inherit the disease.

So if a couple knows they are carriers, wants to have biological children, and wants to ensure the children do not inherit the disease, a second round of screening is possible. Here, a couple can create an embryo or multiple embryos and screen them for disease. As Marchione reports, “a growing number [of couples] are screening embryos and using only those without problem genes."

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Finally, prenatal testing is available once an embryo becomes a fetus. These tests typically identify chromosomal abnormalities such as Trisomy 21 (Down syndrome, the most common chromosomal abnormality), Trisomy 18, and Trisomy 13, among other disorders. At this point, a screening test may lead to genetic counseling, in which case a counselor will advise the parents about the medical risks their child may face throughout life. An amniocentesis can provide a definitive diagnosis in 99 percent of these cases, and based on that diagnosis, women have the choice to terminate, or proceed with, the pregnancy.

No parent wants a child to suffer. Screening tests at every level help humans to eliminate genetic disease and, therefore, human suffering. And yet Christians have good reason to be concerned about the use of these tests, and to advocate for the protection of human life, however it is given to us.

Screening tests offer general medical information. But a general medical summary never describes a particular person. And if it did, it could never provide holistic information about that person. Even the hypothetical typical child at the beginning of this article faces great risks of suffering and hardship in life. But to reduce any person — be they typically developing, or those with disease or disability — to a medical diagnosis is to treat them as less than human. We are more than a medical description.

Our daughter has Down syndrome. Studies show that 80-90 percent of women whose child receives a prenatal diagnosis of Down syndrome choose to terminate their pregnancy. (Many women, myself included, opt out of a prenatal diagnosis, so that statistic doesn’t indicate that 80-90 percent of babies with Down syndrome are aborted.) The abortion rate demonstrates a pervasive belief in our culture that a child with Down syndrome is undesirable. Statistics are not as easy to come by for the genetic diseases discussed in this article, but the number of births of babies with genetic diseases has dropped since genetic screening became available, presumably due to a higher rate of pre-implantation genetic screening and the subsequent rejection of diseased embryos (and even embryos who have the possibility of developing the disease) and/or abortions.

I’ve read about other moms who say they are concerned about the decreasing number of individuals with Down syndrome in our culture because they worry that their children won’t have friends and social and medical support. That’s not what worries me. What worries me is that having fewer individuals with Down syndrome in this world will harm the rest of us.

I worry about the impoverishment of our culture as we insist more and more on conformity to a biological norm, and perhaps more particularly, in the case of Down syndrome, to a norm that is related to IQ. In the case of genetic screening, I worry that we will reduce individuals to a medical diagnosis, and that we will begin to value humans based on physical health rather than on their reflecting the imago Dei. I worry that we will begin to believe that life is something we ought to control instead of a free gift from God. I worry that we will assume suffering makes life not worth living, rather than seeking to care for one another, seeking out God’s care on behalf of one another, in times of suffering.

I can say with confidence that our daughter Penny has been a great gift to me, to our family, and to our community. We would be missing out on the richness and fullness of life if she were not our daughter. Genetic screening offers possibilities for potential parents to make careful decisions about conceiving biological children. But when it is used to eliminate human life, genetic screening eliminates not just an embryo or a fetus. It eliminates a piece of our common humanity, and it impoverishes us all.


Amy Julia Becker is a writer, a student at Princeton Theological Seminary, wife to Peter, and mother to Penny and William. She blogs at Thin Places.

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Posted by Sarah Pulliam Bailey on February 26, 2010 8:23 AM

Comments

this is very informative article about the condition after pregnancy thanks for the posting i think it is very helpful for many women

Posted By: What the bleep | February 26, 2010 11:48 AM

Well said. I also didn't want the test done since I know that it would not affect the outcome of the pregnancy, but when I learned that as much as 90% of prenatal diagnosis are terminated it made me so sick. My daughter with Down syndrome is also named Penny. :) Well, we named her Penelople, but she is frequently called Penny. Best of luck!

Posted By: maureen | February 27, 2010 6:54 AM

Well I may be somewhat biased but your daughter has a wonderful name!

Nearly 21 years ago my second son was born with Down's Syndrome totally unexpectedly on my 29th birthday.

He was definately my suprise present and as well as being chromosomally enhanced, he was one of the 47% with cardiac issues. He also had Hirschsprungs, so I have no idea what the statistic for him being born was other than the fact that I had a 1 in 800 chance of having a baby with Down's Syndrome at my age.

So much information is given as statistics and percentages, but it really doesn't make that much sense when it happens to you anyway. Yet often the risk is emphasises so heavily - you have a 1 in 200 chance of having a baby with Down's Syndrome (oh my goodness that's such a worry)when actually that means you have 199 chances of it not having Down's Syndrome! And as you point out, there are other things you can't screen for, but nobody points those out becuase they can't tell you beforehand.

Anyway, what exactly is so bad about Down's Syndrome? Ok, your child may be slower to achieve than their peers, they may need more help and support from their family, but Down's Syndrome itself is not some life threatening uncurrable disease, there are a lot worst things that can happen to your child even after birth.

And why when they tell you all the negative things do they so often forget to point out the positive? People with Down's Syndrome are usually kind and generous of nature, they are not mean spirited and ABOVE ALL they can achieve goven the oppoprtunity. There are some fantastic self advocates now showing the world what they can do, in fact far to many to mention names here!

Ok so not everyone with Down's Syndrome will achieve like them, but no baby comes with a guarantee of how they will grow or what they may contribute to society - if there was a genetic test for future mass murders then maybe I'd be interested!

I consider myself very lucky that my son was born at a time when testing wasn't routine and I wasn't considered high risk so I didn't have to make decisions about testing, because back then I knew very little about Down's Syndrome and I might just have been pressured into a decision that would have changed my life, but not for the good.

Instead I had Daniel, went through some hellishly hard weeks as his medical problems unfolded and he had his first lots of heart and bowel surgery and I tried to juggle being a mum both to him in hospital and his 15 month older brother at home. Then at 14½ weeks, something perhaps even more unexpected than his birth happened - he died, but that was not the end of his story.

I became involved in a group for parents and have spent the last 20 years doing what I can to support and inform other parents and educate society of the wonderful gift that people with Down's Syndrome can bring to your life. You can read more on my blog http://dhgorguk.blogspot.com if you like.

So finally I'd like to say, from one Penny to another - go show the world how great you are girl and do our name proud!

Posted By: Penny Green | February 27, 2010 9:54 AM

I too mourn what the world will miss as our culture systematically reduces the diversity of humanity. My experiences with individuals with Down syndrome (both during my childhood and with my daughter) have led me to believe that the ability to live in the moment brings us closer to God. Individuals with Down syndrome to have an inherent ability to strip away all the social, spiritual and economic stresses that the general population experiences in our culture. Without the worldly distractions in their way, I do believe this gives them a straighter line to God.

Posted By: Beth | February 27, 2010 10:22 AM

A special education techer where I teach said that over the years he has been teaching, his students have changed from mostly children with Down Syndrome and other various birth defects to mostly children damaged by alcohol and drugs. What a sad reflection on our society that while we throw away babies who we know will have handicaps through abortion, at the very same time we create other mental and physical handicaps through selfish and destructive behaviors.

Posted By: Elizabeth | February 27, 2010 1:09 PM

Wow, that "termination" rate is astonishing. I knew we could test for Down's Syndrome but I never imagined the amount of couples who would throw their child away because of it. And Elizabeth's comment also has a great point, even though sad. This "progression" of our society does not make sense to me. I understand that we want to be prepared for our child's problems when they are growing, but to use this great knowledge for death? That I do not understand. We are trying to use science to create our own little crystal ball. But you can't see what other natural disturbances will be in a child's life. Instead of medically "foreseeing" the future, what if a mother could know that her child would grow to depend on drugs and become destructive in his early 20's (per say), would she destroy the life before it even began?

Posted By: SarahStickBug | February 27, 2010 10:31 PM

I have Turner's Syndrome, and have been looking into it more because my husband and I are trying to start a family. It made me sick to hear about so many parents who justified terminating pregnancies just like mine. There can be physical complications, but other then infertility, I don't experience any of them. My intelligence is normal, and I am healthy. Even if I had had some of those complications, would my life not have been worth anything? Just the thoughts from someone who probably would have been terminated 28 years ago if I hadn't been born to a great family...

Posted By: Emily Gardner | February 28, 2010 3:07 PM

Preach!

Posted By: Margot Starbuck | March 1, 2010 12:43 PM

...keep up the good work Amy Julia. You speak perfectly for all of us that are blessed to have children with Down Syndrome. :)

Posted By: Chris Carter | March 2, 2010 10:37 AM

That question is so ridiculous. Thinking along the same line then, why don't you just take your own life, that of your family, your neighbors, friends, and anyone you happen to tun into on the street? After all, if they are children or believers, they will go to heaven and be much happier than they are here on earth. Well, obviously that is not allowed, and God should be in control of life and death, not terribly sinful human beings.

Have you ever researched the founder of Planned Parenthood? The founder was Margaret Sanger, who was extremely racist and used the idea of abortions for the means of eliminating African-Americans and other non-white ethnic groups. She helped inspire Adolf Hitler in his views of eugenics and "murdering socially undesirable people." You can watch videos of her online receiving awards from Hitler for her work in killing babies, particularly, African-American babies.

Posted By: Barbara | March 2, 2010 5:19 PM

Just putting this out there... You have a whole paragraph dedicated to the things you are worried about, but why worry?

"Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." -Matthew 6:34

Also, genetic testing can be a positive thing. For example, if you find that your child could inherit a certain disease, knowing about it will allow you to prepare for it. However, I do agree with you that it can have very negative effects. Just a thought; instead of saying your child has a 25% chance of having this disease, why don't they say that the child will have a 75% chance of not having the disease?

Anyways, interesting stuff!

Stay positive! =)

Posted By: Shannell | April 15, 2010 12:13 AM

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