A few days ago, I came across this article on the internet about a women who carries a gene for a disease called “Gertsmann-Straussler-Scheinker Disease, or GSS, a rare neurodegenerative condition that causes symptoms that start in mid-life and inevitably lead to death.” Apparently her father died of the disease in his fifties, as did her grandfather. When it came time for her to think about having children, she decided to pursue having children through a procedure which combines IVF with eugenics. I can’t claim to understand how the science works, but basically, she had eggs harvested which were then fertilized using her husband’s sperm. The resulting embryos were then tested to see which ones carried the gene for GSS. The ones that carried the gene for GSS were “destroyed,” a process the woman admits was troubling, and then the remaining embryos were either implanted or frozen. As a result of this process, the woman and her husband now have three children who are free from carrying the GSS gene.
There is a great deal about this article that I find incredibly troubling. I suppose some might defend her actions on the basis that the embryos that were destroyed were destined to die anyway from GSS, so although they were destroyed, she at least spared them from having to go through the process of dying via GSS. However, all of us are going to die of something, at some point, so that argument doesn’t really sit well with me. While the embryos that were destroyed might not have died from GSS, they could have died a slow (and early) death from cancer, Alzheimers, or any other number of diseases. Leaving aside the morality of the actions that were taken to get to the point where the embryos were destroyed, there are clearly ethical issues with taking these kinds of actions. How far should this technology be allowed to go? Should mothers and fathers only be allowed to destroy embryos which could possibly develop an inherently fatal disease? What if the disease isn’t likely to develop until the embryo is born and reaches the age of 80? 60? 40? 20? What about using this technology to make sure that a girl or a boy is born, or that a baby isn’t born who will eventually develop a mental illness? What if an embryo carries a gene for cancer, but that cancer won’t develop until the age of 60? Where would we draw the line between a life that is worth living and one that is not? Again, we are all going to eventually “catch” a disease that will kill us. For some of us that might happen from cancer at a relatively young age, for others of us it might be from congestive heart failure at the age of 90.
I understand where the woman in this article is coming from — my guess is she just wanted to prevent her children and her children’s children from suffering. She probably didn’t have any motives other than that. Those motives, while understandable, are misguided, I believe. We live in a world that is full of suffering. Those of us who are Christians see the suffering as a result of the entry of sin into the world. Regardless of religious belief, though, I don’t think that anyone can deny that suffering exists. I also don’t think that anyone can deny that everyone will experience suffering in his or her life — it’s inevitable. How that suffering affects us and how we handle it is often what gives us incredible amounts of wisdom, joy, sympathy, and strength. Is suffering easy? No, it’s not, but it’s an inescapable part of this life. I can understand the desire to want to control how those around us experience suffering, but the reality is that while this woman might have prevented her living children from contracting GSS, she hasn’t prevented them from dying of something, someday. I also wonder if she stopped to consider that if her grandfather or father, had access to, and had decided to use, this technology, she would not be alive today because her life, and the life of her father, wouldn’t have been considered worth living.
All of this came to mind again today because today would’ve been the 36th birthday of my first husband. I found myself reflecting on how my life would’ve been different had Peter’s mother known that he carried a gene for liver cancer and decided that his life was, therefore, not worth living (for the record, I know that she never would have done this!). I am where I am today because of being married to Peter, losing him, and grieving him. His life was an incredible gift to me and has made me the person that I am today. Was there suffering involved in getting to this place, yes. But, I am in a good place, and I wouldn’t be here without the suffering that I had to go through to get here. The suffering has (I think!) made me a better wife and mother. I don’t advocate going out and finding as much suffering as one can find and embracing it, but I do advocate trying to embrace the suffering that inevitably comes to us in our daily lives and letting it transform us.
Happy Birthday, Peter!