How Much Would You Change You?

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If you could change something about yourself, would you do it? Lots of people go for plastic surgery. They have a good idea what the botox or tummy tuck will do. But what if you could go deeper? Would you change yourself at the chromosomal level if you could, without really knowing who the you would be on the other side of the change?

A new blog by someone with Down Syndrome answers that last question with a resounding, “No!” (The author of the blog does not give his or her name, but it is published on the VATTA website.)

The author says in no uncertain terms, “If I had the choice to turn off the extra chromosome in me I would not do it. I love who I am and have a great life.”

That author qualifies the answer somewhat by saying that it would be great if the chromosomes in certain body parts could be changed if they are causing trouble, such as heart or thyroid problems. 

Still, changing a person’s chromosomes changes who they are. This author fears this prospect when thinking about new pressures this could place on expectant parents: “This new research makes me feel worried and hopeful for the future. I am worried about new mothers being pressured to use this to eliminate Down syndrome. In our world we have lots of diversity. That makes our world such a great place to live. On the other hand, I am hopeful that people with Down syndrome can have other health issues cured to help have a better quality of life.”

I’ve heard it said before that just as the most important scientific discoveries of the 20th century were in physics, so in the 21st century the most important discoveries will be in biology. What if someday expectant parents could change the chromosomes of their unborn children, should they be allowed to do it? If we could change our own chromosomes, should we be allowed to? For what reasons? Down syndrome? Other chromosomal outliers? Health problems? Skin color? Gender?

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I agree that with advancements in medical research we become both hopeful and worried.

With infertility treatment, many couples can now have a family and raise children. Many diseases can be diagnosed and treated.

However, these advancements are not purely clinical procedures that result in disease-free outcomes. We also move into the realm of ethics and moral decisions – that ultimately has to be accountable before the LORD.

Originally the world was created “very good” (Gen 1:31). Because of Adam and Eve’s disobedience, God cursed the world – bringing death and decay into it (Gen 3:17, Rom 5:12, Rom 8:22). Adam and Eve did not carry accumulated genetic mistakes. As genes passed from generation to generation, the imperfect copying process in a sin-cursed world resulted in errors, illness and disabilities.

There are several examples of how mankind attempted to eradicate these errors. One of the most chilling examples was Hitler’s Lebensborn / Fountain of Life programme in 1935-1945 where he attempted to create a super-race of Nazi-elite. Some of the survivors of the programme met in 2006 – confronting their past lives of horror, shame and abuse.

In 1926, Stalin gave orders to create “super warriors” – “an invincible human being, insensitive to pain, resistant and indifferent about the quality of food they eat”. Ilya Ivanovich Ivanov (his leading scientist) failed dismally in his experimentation in West-Africa.

A married couple approached an infertility clinic. The husband was not able to have biological children of his own. The wife was able to conceive and have children. They wanted the wife to be inseminated with her father-in-law’s sperm to preserve the family-genes. The clinic refused on moral grounds. However, a private medical team carried out the procedure later.

In the USA in 2012 a surrogate mother refused to abort a baby with congenital defects despite tremendous pressure form the biological parents and their lawyers. The little girl was later adopted by another family.

Our daughter, Ingrid, was born in 2005 with a rare chromosome translocation. According to medical reports at the time, this should not have had an impact on her abilities or development as it was “complete”. After her birth, we were confronted with a radically different picture: agenesis of the corpus callosum, West syndrome, catastrophic epilepsy, profoundly disabled, cortically blind … and the list went on.

I am not blaming medical science here – because we soon realised that medicine is more of an art than an exact science. And that some decisions are based on human judgment – that leaves room for errors. We also learnt that some illnesses cannot be conquered and that we had to undertake a journey in faith with an exceptional child.

I know now that my child does not need to have blue eyes, blond hair, with three gold Olympic medals around her neck receiving a degree in rocket science for me to be judged as a good father. I work 12-hour shifts – I remember Ingrid staying awake until 20h00 during my day-shifts (despite my wife’s best attempts to put her to sleep). When I got home, I picked her up, she would give a soft sigh, snuggle against my chest and fall asleep. In her way, I knew she said: “I love you daddy and I feel safe with you”.

Medical and biological research can become a minefield if we do not take moral and ethical issues into consideration. Mankind once believed that “ … you will be like God …” (Gen 3:5) – and we failed because we do not have the nature nor the knowledge to deal with it.

This leaves us with the final realisation that what we know is limited, that we will be held accountable and that all glory belongs to the LORD.

Psalm 139: 13-14 “For You formed my inward parts: You covered my mother’s womb. I will praise You, for I am fearfully and wonderfully made; marvellous are Your works, and that my soul knows very well”.

Soli Deo Gloria,

Willie Botha

Guide

Willie, I fear that your "chilling" examples from the Hitler and Stalin eras remain alive today, though in more subtle forms. From abortions performed for various reasons (such as genetic anomalies and gender selection) to continued experiments on human cloning, we are entering a new frontier in humankind's attempt to create a master race. The voice of Christians (and people of other faiths) who can speak articulately about the sanctity of each human life will be critical.

Guide

Still, genetic manipulation has the potential for so much good too as this NY Times article illustrates. Lord, give us wisdom!

Mark, thank you for this post. As I mentioned in my email to you, your post comes at a very good time because we are currently in the middle of a series in our small groups on bioethics. Since I proposed this series, I was asked to lead it and since I am not an expert in this very difficult subject I have been doing a lot of studying over the past couple of months to prepare. One of the first things I discovered is that bioethics does not presume to follow our Christian beliefs. There is a wide range of beliefs on what is ethically acceptable in the field of medicine. So, in response to your last paragraph, while having the ability to change our own chromosomes may have positive implications, where do we draw the line? When I think of the passage in Psalm 139:13 

For you created my inmost being; you knit me together in my mother’s womb

I can't help but picture in my mind God as an artist, intimately involved in creating each one of us in His image. If we see a painting or sculpture and we can't understand why the artist created it the way he did, do we have the right to go up to the piece of art and "fix" it so it makes more sense. We don't understand why God allows people to be born with disabilities, but does that mean we have the right to "fix" them? We need to help them have a better quality of life, but how far do we go? I should be honest here and mention that both my girls were born healthy, without disabilities, so I have not experienced the pain and questioning that parents of children with disabilites go through. The theme of our study last Sunday was Value. How does the Bible describe our value compared to our society's description? Often society tends to say that if a person is not able to contribute to society in a productive way, then that person is worthless. But we are told in 1 Corinthians 12:18-26 18 But in fact God has placed the parts in the body, every one of them, just as he wanted them to be. 19 If they were all one part, where would the body be? 20 As it is, there are many parts, but one body. 21 The eye cannot say to the hand, “I don’t need you!” And the head cannot say to the feet, “I don’t need you!” 22 On the contrary, those parts of the body that seem to be weaker are indispensable, 23 and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, 24 while our presentable parts need no special treatment. But God has put the body together, giving greater honor to the parts that lacked it, 25 so that there should be no division in the body, but that its parts should have equal concern for each other. 26 If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.

During our small group discussions I was reminded that everything is not always as black and white as I might think. We need to be open to discussion and to be ready to listen and respond in Christian love. 

If anyone is interested in studying bioethics from a Christian perspective I would like to recommend the following:

1. How To Be A Christian In A Brave New World by Joni Eareckson Tada and Nigel M. De S. Cameron

2. http://cbhd.org/   Center for Bioethics and Human Dignity  -  offers papers and commentaries on various issues written by Christians in the field of bioethics. Many have been transcribed into audio podcasts

 

 

Guide

Steve, you hit the nail on the head. Too often in society and the church people with disabilities are treated as problems to be fixed rather than the works of art whom God has created every single one of us to be.