Dangerously Disabled: The Cost and Consequence of CRISPR Cas9 (Gene Editing)

While driving home from work and lost in the many thoughts that flood my mind on a daily basis: Thoughts about family, work, church, ministry, friends and perhaps most common the Bible. It was in the midst of these thoughts that I mechanically tuned into NPR radio: 1) because I enjoy talk radio, and 2) because I have no other options as my middle son several years back decided my truck antenna functioned better as a weapon to fight the enemies of justice and freedom than it did as an antenna. Since then I have been enslaved to only 3 stations. Coincidentally the program that was airing dealt with a new technology called CRISPR CAS9. An extremely complex technology that has come about only in the last few years and now makes it possible for doctors and scientist to edit our genetic codes in order to create children with no genetic predispositions for certain debilitating diseases.

I must admit that at first this technology to me seemed brilliant. I mean, could you imagine for a moment a world where certain types of cancer don’t exist, a world where our genetic codes can be stripped of predisposing genes for alcoholism, dementia, Alzheimer’s. At the surface this all sounds so wonderful. Unfortunately a deeper look reveals something very sinister about us and society as a whole.

What if through this technology we are able to delete any and all genetic information that leads to other such things, things like downs syndrome (a condition my youngest daughter has). What is the effect…the cost…or the consequence that we as a society will face as a result of creating designer babies that have no genetic faults. In time we will no doubt see a decline and eventual extinction of children born with downs or any of the other conditions that may make life more difficult for us as parents. But be assured that in our effort to obtain an easier and less complicated life where our days are not filled with doctors appointments and the constant concerns about what the future holds, we lose something of the richness life once held, the goodness that once we experienced through the lives of these precious children.

Hardly a day goes by that I don’t find some heartwarming article about a child with downs overcoming insurmountable odds to have a normal life, or should I say extraordinary life. You see, it is us, the normal ones, the healthy ones that have normal lives. You know…the kind of life where we experience the constant bickering, backbiting, and hate filled cynicism from a very suspicious society that must constantly asses each others motives. Yes, this is normal, what is extraordinary though is that a child with downs is able because of a simple flaw in their genetic code to rise above the fray and love unconditionally. In fact I would say this is not just an extraordinary life, it is a superior life.

God has taught me more about love and my own inability to do it well through my 5-year old daughter (Scout).  When I am impatient…she is patient, when I am angry…she is joyful, when I am sad…she comforts me, when I am ugly…she is kind, when I am ungrateful…she is thankful, when I am full of self-doubt and self pity…she is full of confidence and self-assured. What I have learned is that even through the life of a 5-year old girl with downs, a little girl who the world says is flawed…God can and will demonstrate his love for us by how they love us, when often times we are so un-loveable.

Last Easter while attending a program at Southside Baptist Church in Warner Robins, Ga. I remember (seated directly in front of us) was a man who in my eyes stood tall among Giants. He was a simple man and there was nothing all that spectacular about him. That is of course if you factor out the Love he had for his severely disabled daughter who was oblivious to the fact that people were actually trying to watch the Program. Yes, in the worlds eyes she was a distraction. To me she also was a distraction, but for very different reasons. You see that day I imagined myself in his shoes and what he didn’t know about me was that I was right in the midst of a hurricane fundraising season where my wife and I were desperately trying to raise the funds to adopt our downs syndrome child. That man offered me the assurance I needed when I needed it the most. I had doubts about my own ability to love a disabled child like that man had loved his own, I never voiced those doubts; I didn’t have to, God knew the whole time and on this day for this reason he seated us behind a giant of a man who stood tallest when he stooped help his disabled daughter. Unconcerned about what the world would think…he loved…and he loved well.  I have no idea where his wife was at…maybe he was widowed, maybe he was giving her a much-needed break…I just simply don’t know. What I do know is that if she had been there the experience for me would not have been the same and God knew that too.

I have said all of this to say that while this technology offers us so much in terms of health and wealth, we must also consider what it strips away and is it worth the cost. Is it worth losing the ability to witness the sacrificial love of a father unconcerned about what the world thinks as he lavishes his daughter with love like a KING. Is it worth losing the ability to witness a child love unconditionally and to know that no matter how poorly we have performed or the number of promises we have broken, they will never love us any other way. This is what it means to know the love of God and I for one am not willing to make that sacrifice in favor of a healthier and wealthier society.

If the truth were known I think what we would find is that we, the healthy and normal members of society are in fact the most severely disabled. We have lost the capacity for love that is so easlily displayed in the lives of those that are amongst the least these. We are dangerously disabled and the world is now watching and witnessing what a society looks like that has not love…and it is not a pretty picture. As for me I will go home today and watch my little Scout love the world to death as she loves like Christ, for that is exactly what he did…He loved the world to death.