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My thoughts on gene-editing as someone with a genetic disorder

caelinfoley's picture

Children come up often when you have a genetic disorder - at the cardiologist, my doctor asked me if I had been to a genetic counselor recently, to which I said no. He then mentioned multiple times how important it is to have genetic counseling before planning a pregnancy, despite me being only 18 with no intentions of having a baby anytime soon. It seems everyone’s mind is on my uterus, and if I will be having children, and if I think it is fair to subject them to my disorder. Simply put, I do not know. 

I was diagnosed with Ehlers Danlos Syndrome when I was thirteen years old after months of appointments and procedures. My geneticist at the time told me to get re-tested before I decide to have children, as she thought I presented too severely for the type that currently cannot be confirmed genetically, and believed that I have a currently unidentified type; this is a lot of pressure, as you can probably imagine. I am proudly disabled, but I have suffered and lost so much at the hands of my genetic disorder. I had to quit gymnastics, the only thing that gave me confidence in my awkward little middle school phase, and became isolated from my peers spending more time in physical therapy and doctor appointments than class. 4 or 5 years later, my stomach is paralyzed, I struggle to walk without falling, and I’m looking at multiple upcoming surgeries. This is my loss.

When I think about gain, it feels complicated. Technically, I’ve gained a community amongst others who have the same disorder, but I don’t feel connected. The euphemisms of being “zebras” or “spoonies” make me cringe - why do we always have to cater our labels and community to abled folks while simultaneously infantilizing ourselves? I do not feel interlocked with these terms, because I am not a zebra, I am a person with a rare disease. I am not a spoonie, I’m a chronically ill person, and so on. I have somewhat gained the disability and rare disease community, but, most of these are defined by what you have or where you’re located, bringing me back to step 1. 

This all leads to the question of would I be comfortable with genetic engineering? Reading this, you’d probably think yes, but no. Despite all of my complaints, I think that being disabled is crucial to who I am, and the future of identity of my family. My children will have a 25% chance of inheriting my disorder, 50% if I marry a carrier or someone with Ehlers Danlos. These aren’t great odds, but as we look towards a future of improved treatments, I feel more optimistic about their hypothetical prognoses. I wouldn’t want them to be completely absolved of the chance, and perhaps that is selfish, but if only those who cannot afford genetic engineering and editing remain diagnosed with Ehlers Danlos, they will continue to be failed by the medical system, just like I have been as a low-income person. To edit their genes would create a hierarchy, medically and wealth-wise, while also communicating that I, along with other people with genetic disorders, are defective and mistakes that should be edited out of our world instead of being embraced and having further research done to help our livelihoods. I should not change for our ableist society, and neither should my genes.