Design Your Own Baby? – A Genetic Ethics Dilemma

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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Comments

  1. An interesting movie about designing humans is Gattaca (1997: Ethan Hawke, Jude Law, Uma Thurman–of course the latter two play genetically “perfect” humans!); another exploration of the moral dilemmas around genetic testing is Twilight of the Golds (1996: Garry Marshall, Faye Dunaway, Jennifer Beals, Brendan Fraser–the “disability” that comes up on screening is a high probability of homosexuality).

  2. This is an interesting topic, with answers that are not so black or white.

    Speaking of black and white…

    My husband (who is black) was preparing me and worrying for our baby when I was pregnant with our son. I (who am white) am not proud to admit that I sometimes rolled my eyes at my husband’s concerns. He was trying to delicately–and sometimes not so delicately!–explain that our child would live a life of prejudice and have a hard time being accepted. He’d possibly be bullied and not allowed to hang out with certain peers because of our (his parents) different skin colors. I thought my hubby was reaching, that he was remembering the prejudice of his own childhood, but that things were different now.

    I completely ignored the fact that I didn’t know because I’m not black, or mixed race. Oops!

    My husband, sadly, was right. Our son has dealt with everything my hubby feared he would. And though I wish it weren’t true, and though I see my son being forced to learn self-advocacy skills, I am almost happy that I was blind to these issues before my pregnancy. Because had I known, I can’t be sure I would have chosen to have Declyn. Yet, he’s so much wonderful in my world!!

    So, I don’t know what the answer is. My son will possibly always deal with hardships that I can’t even understand, and it all could have been avoided if I would have stuck with my own race. Not cool!! Yet…. he’s living unfairly because I refuse….

    It’s messy. I think, though, that I probably would fall on the against manipulation side, only because it is a slippery slope. And though I understand all of your reasons–and applaud you for parenting actively at such an early stage!!–I still think my all-natural hippy wanna-be soul would suggest avoiding genetic… oh, I don’t know! It’s messy!!

    You know what, I think that whatever you decide to do, it will be right. Because you’re going into it thoughtfully and respectfully. And if you don’t mind, I’d like to babysit!!! 😀

  3. I think the whole topic creeps me out. It is like erasing individuality and exchanging for uniformal beauty and perfection. Stepford wives club?

  4. Wow, what a thoughtful exploration of this. It is such a tension between the possibilities of science, and the slippery slope that genetic testing and modification can lead to. I appreciated reading your personal experiences, too…

    1. I’m delighted you took the time to read this, especially since you are most definitely one of my favorite bloggers! I hope to somehow figure out a middle ground between the tensions of genetics!

  5. My first thought when I read this post was that some of us just have to think deeply about everything. We can’t help it. Decisions that other people just make, we agonize over and come up with so many different angles. This may be one of the gifts that your disability has given you ( I think of the character Adrian Monk – “It’s a gift … and a curse.”) I am not sure why it is this way. Thinkers gotta think.

    Anyway, another thought regarding future pregnancies for you might be adopting an embryo thorugh http://www.nightlight.org/snowflakes-embryo-donation-adoption/ … if it is the whole pregnancy, birth, breastfeeding experience that you want. Just a thought.

    I wish you the very best and I hope that you are able to experience motherhood, however, it comes, because it’s wonderful.

    1. Embryo adoption…what an incredibly interesting option. Thank you so much for sharing that with me. And all of the over-thinkers have to stick together!

  6. As a mom of three young people with mito (ages 16,17 & 20) I appreciate your thoughtful post about something that could directly affect my children having children some day. Some things about Mito to keep in mind…mitochondria have their own DNA, separate from the nuclear DNA (the DNA that determines hair color, etc, and is implicated in most genetic diseases). In about 20% of the cases of mito, it is defects on the mitochondrial DNA (mtDNA) that cause disease, and it is passed on 100% of the time, but almost exclusively from the mother. Additionally, this disease gets stronger (read: worse) with each generation of offspring. This means two of my three children, my girls, will without question pass this disease to their children, and that their children will be more affected than they have been. My children fall in the “moderate” range of this disease, meaning that if they could carry a baby to term, it would likely deal with severe, even more life threatening issues. In their case, there are no maybe’s.

    This technology then could mean the difference between them having children of their own or not, knowing what they know about living with this disease. There was a time when it all seemed so unimportant…they were not expected to make it to adulthood, much less be able to have children of their own. Both girls started asking questions around age 9 & 10 respectively, before the worst of their current issues had even begun, and both didn’t hesitate to say adoption was their plan. We have defied the odds and they are approaching adulthood, with a slew of medical issues and the knowledge that a simple cold could be devestating, and with a desire to live life to its fullest in spite of their challenges, and they dream every once in a while of what it would mean to be able to have their own children.

    Mito has brought both joy and pain to our lives together, and while I wouldn’t change a thing about who my children are, and realize part of who they are comes from the challenges that they face, I also know that they, better than anyone else, understand what they would be passing on to their children.

    In the end, this technology won’t change a thing about the children produced, save for being very, very sick.

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