This is Derek! Welcome to the blog post with lots of abbreviations. IVF is full of ethical implications; one of which is the practice of genetic screening or Preimplantation Genetic Diagnosis (PGD). During the IVF process, doctors fertilize eggs in a petri dish and then implant one or two into the woman after waiting 4-6 days. However during the PGD process, the development of the embryos is halted around day 4 or 5 when they become blastocysts. Doctors then remove one of the cells off of the newly formed blastocysts, and this removed cell is then tested genetically for diseases such as Down Syndrome, Trisomy-18, Tay-Sachs Disease, Cystic Fibrosis, Osteogenesis Imperfecta etc… If the embryo tests positive for one of these diseases, then that embryo is discarded and only healthy embryos are implanted into the woman.
PGD offers hope for communities like the Ashkenazi Jewish communities where Tay Sachs is drastically more common compared to the rest of the United States population. This terrible disease causes the death of young children and is recessive as well which means many parents risk having children with the disease if they come in contact with another carrier. This disease is so terrible that the Ashkenazi community has actually set up a registry where romantic couples can check and see if both of the people are carriers before beginning to date. PGD however offers hope for carriers of these diseases because it allows for the removal of embryos which would have this disease.
I find the whole topic of PGD particularly fascinating, not only for the hope it gives some couples, but also for the ethical implications of using this technology. Megan and I became more aware of PGD not only through our journey of IVF but through reading a book titled No Easy Choice by Ellen Dollar. The book chronicles Dollar’s journey with the disease, Osteogenesis Imperfecta (OI) or more commonly known as brittle bone disease. The most extreme cases of children with OI cannot even survive childbirth, however for many people with OI they are able to live relatively normal lives albeit with extreme pain and scores of fractures. For children with OI, learning to walk is a terrifying ordeal as every fall or stumble possibly results in spiral fractures of the femur or broken hips. Painter herself suffers from OI and writes that by the age of 14, she had around 60 broken bones. Thankfully, after puberty these fracture rates plummet due to different biological factors, but the scars and pain remain.
Dollar discusses her family’s journey as they debated whether or not to use PGD on their future children. The dangerous part of OI is that it is a dominant genetic mutation which means that Ellen and her husband have a 50% chance of having a child with OI. While Megan and I are not carriers for diseases such as OI, PGD is a question that Megan and I had to wrestle with for our embryos in the IVF process. Is it ethical to use PGD upon our embryos to pick the healthiest of them?
Dollar and her husband had no fertility issues, and PGD wasn’t quite to the level it needed to be when they began their family the old fashioned way. They eventually discovered that their first daughter Leah had OI. What followed is a series of tragic falls and hospital visits. Ellen records that Leah didn’t learn to walk until she was two because of complications with OI. When she did learn to walk, she broke her first bone at the age of two and a half. She then broke three bones in three months. After going another nine months, she fell and broke both her tibia and her fibula and her arm in one fall. Due to OI, these are not simple fractures but compound fractures with bones sticking stomach curling angles. Leah broke six bones between the age of two and four.
By the time Ellen and her husband decided to have a second child, PGD was further along and an option for Ellen. The rest of the book is Ellen dealing and wrestling with whether or not they should use PGD to select their second child. However because of Leah, she asks “By using PGD to ensure OI-free children, were we diminishings the inherit value of people like me , Leah, and others living with disabilities?” Furthermore, she also wrestled with her moral obligation to her future children to alleviate their suffering. What role does PGD have in our future world?
I think there are two questions at hand in this conversation: Is it the moral obligation of parents to relieve suffering of their children by any means necessary? And what role do those with disabilities have in society? When we partake in PGD and other means to remove the disabled from society, what are we saying about those with disabilities for example? Is it better for people with disabilities to simply not exist? Is there any benefit they bring to the world. Is it better to exist with OI than to never exist at all? The potential of PGD is forcing families to ask this question. When we engage in practices which remove disabilities from the world, we are subtly saying something about what it means to be disabled. Diagnostic techniques such as PGD and Amniocentesis make a statement about life with disability. Megan and I tested ourselves for these diseases and neither of us are carriers, so we forwent PGD in our embryos. As I write it, it feels like a cop out. I feel inadequate to tell those who have to make these decisions what they should or should not do. However, I know from my experiences with those who are disabled in some way that a disabled life is a beautiful life and one worth existing. Disability challenges our “abled” concepts of independence. It challenges Christianity’s hyper-intellectualization of faith by questioning what it means to have faith. There is much that our world gains from engaging those with disability. People with disability help those of us who are abled to realize that the value of life is far beyond what we produce. A world without Down’s in not a utopia but a dystopia. By removing all disability, we remove the beauty of diversity. I write that all to say also that there is a place for relieving the potential pain of potential people, however before making these decisions, we must pause and contemplate what we are saying about life.
The second question is more difficult. Robert Edwards writes, “Soon it will be a sin of parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children” As parents, are we morally obligated to provide the best life and to remove the most suffering from these potential lives? I believe the answer is no. I have a moral obligation to not be negligent, however we are seeing an onslaught of hyper parenting. Parents feel the need to ensure that their children have the “best” whatever the best will be. The best school, the best tutor, the best whatever, and now there is the potential for children to have the “best” genetic makeup. I believe this desire for “best” is what is creating the rise in anxiety disorders among our children. When you are given the best, you are expected to be the best, and so you feel this ever increasing anxiousness to arrive. As parents we fail to aide our children when we bulldoze a path forward for them that eliminates all suffering. Especially as a Christian, I see potential in the redemptive nature of suffering both in my life and in the lives of my children.
PGD is a burgeoning technology which is only growing in its reach for future couples. It is a technology with both potential for great good but also for potential to shape how we view those who are disabled. In that context, it’s an issue that we should be thinking about and discussing