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Time and time again, I’ve asserted that I would never want my disability to be “cured.” If the technology to reverse my genetic make-up and eradicate the source of my disability became possible in my lifetime, I’d be even further than last in line to sign up for it. And while I hold fast to that belief as it relates specifically to my body, the subject becomes a whole lot more challenging when considering my hopes of someday giving life to another human being.
Genetic testing has been a source of controversy essentially since it first became a viable scientific option. It’s in the news constantly as advances are regularly being made in available technology. While I have researched and followed the field of genetics for quite some time, in the last two days I’ve encountered an article and a news segment about a genetic advancement which has apparently been around in testing stages for a little while already, but is back in the news: mitochondrial replacement, known to some as three-person in-vitro fertilization (IVF).
I’m guessing you’re probably having a reaction similar to mine…say what?! Using the DNA of three people to make one baby? Now, since I’m most certainly not a qualified expert on the subject, I’ll let you read up on three-person IVF from a reliable source. But, what I do want to talk about is something that continues to weigh heavily on my mind as new genetic technology is continually developed: the ethical dilemma of using such technology.
My ethical concerns relating to genetic engineering are deeply personal. As I mentioned before, I want very much to have a biological child of my own. This raises a whole host of potential issues, not only because I worry about how my body might handle pregnancy, but also because my disability, Larsen syndrome (LS), is an inherited disorder. My mother has LS, her younger brother has it, and despite genetic counseling to the contrary, it was passed on to me. Chances that I would continue this chain by passing on LS are 50/50, and I just don’t know if that’s a risk I’m willing to take.
Because my mother was incredibly concerned that her child would face disability-related hardships similar to what she experienced while growing up, my parents did indeed seek the advice of a genetic counselor. They were relieved when the counselor assured them that LS was genetically recessive, meaning there was little chance of their baby inheriting the disorder. However, several months into the pregnancy, my parents and the doctors realized that the information deeming LS recessive was incorrect, and that it’s actually a genetically dominant disorder. By this time, my parents had already chosen my name and started decorating my nursery. Not for a second did they consider aborting their little baby girl named Emily.
Twenty-two years later, neither my parents nor I regret this decision. I’ve been asked many times before about this, and can truly say I hold no grudges against my parents. I am in fact grateful that I have a disability both because it is something that brings me closer to them and because it is such a rich part of my identity. That being said, having LS isn’t always easy. I experience daily physical pain. I’ve been hurt, excluded, stereotyped, and discriminated against. I say this not because I want pity, but because it is a fact of my existence that I wouldn’t wish on anyone – especially not a child of my own.
This leads to one side of my ethical dilemma: Even though I remain firm in that I would never want a cure for myself and I’ve accepted and embraced my disability, I struggle with the knowledge that I could pass on LS to a future child. For all the depth and richness that disability has brought to my life, is it fair to bypass any use of genetic technology, knowingly passing on the struggles that are inevitably part of my daily life?
On the other hand, is it ethical to design my own baby? If you’re gawking at that sentence, consider this: one of the major arguments against the use of genetic testing to avoid having a child with genetic disorders evokes major concerns about a new eugenics movement – one in which parents pay for “designer babies,” thereby eliminating “defective” individuals from society. This can be equated to a value judgment on the life of a disabled person.
My hope is that genetic specialists would know better than to capitalize on desires of prejudiced consumers who want “perfect” children by allowing use of genetic technology so parents can pay to have “perfect” kids. If used at all, I believe this kind of technology should be reserved only for cases where a genetic disease or disability is involved.
So, which ethical concern affects me more? I honestly don’t know. Do I fear the discrimination and risk of eliminating diversity altogether? Absolutely. Would I love and accept a child of mine no matter what? No question. But do I want to contribute to another generation of the challenges that come with having LS? Not so much. Ultimately, I realize how imperative diversity is to the world. Our differences are what make us unique; they are the reason we unceasingly develop and evolve. Though I have yet to – and don’t know when I will – come to a definitive conclusion on my feelings, I will continue to value the freedom to explore the complicated ethics of genetic technologies from all sides.
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