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.

Guest Post by Ellen Ladau: Mother and Daughter – Same Disability, Different Experiences

When contemplating who to invite to write the first guest post for Words I Wheel By, I didn’t have to search any further than inside the walls of my house. I knew right away that asking my mom, Ellen, to write a post would provide a valuable new voice to my blog. If you’ve read some of my previous posts, you’ll know that my mom and I both have the same disability – Larsen syndrome. Because of this, and for so many other reasons, she is the person who understands me best. Being a disabled parent of a disabled child, my mom has unique perspectives that I’ve always found to be a guiding light as I navigate through my daily life. She taught me the importance of self-advocacy and she has been my editor- and conversationalist-in-chief for all things related to disabilities and my blog. Together, we try to educate people about our disability, equality, and acceptance. And while I didn’t want to edit her words, my mom is far too modest about the role she and my dad play in my life. They are the most amazing parents I could ever ask for. As you’ll read in my mom’s first post, we have so many disability-related experiences in common, and yet our lives have also been quite different. This is a definite sign of how disability rights have changed over the years. 

Even though I am 52 years old, I do not think I have ever spent so much time pondering disability issues as I have since Emily, my daughter, started this blog.  The conversations we have had before, during, and after she writes her posts have been illuminating and have further reinforced how her experiences growing up with a visible physical disability have been very different from my own.

A little family history might be useful now.  My parents are unaffected by Larsen syndrome (LS); same for my older brother.  But I have a younger brother who like me has LS.  It was his birth that led the doctors to suspect a genetic disorder.  However, once our anomalies were diagnosed as LS, our family was assured it was a recessive disorder.  This means that both parents must have the defective gene for the condition to be passed on to a child.  Now flash forward to when I became engaged to my wonderful husband Marc:  we once again consulted with the same genetic specialists who told us that the gene for LS is so rare that we would not have an affected child.  But at my twenty-week sonogram with then fetal Emily, the telltale signs of LS were detected and we knew that our future as a family would again be forever affected.  Only then did the doctors realize that the LS affecting my family was really a dominant genetic disorder.

I am not going to lie – I was emotionally devastated when I knew Emily would face the same physical and emotional challenges that my brother and I did as children.  And truth be told, Emily has had to face even more hurdles and challenging surgeries such as cervical spine fusion when she was 17; she spent much of her senior year in high school in a halo used to stabilize her head and neck while it healed from the extremely risky operation.  But incredibly she has matured into a much more positive, confident, and outgoing person than I am.  While it would be wonderful to think her Dad and I can take all the credit for her successes, I think we truly owe a debt of gratitude to all the disability advocates who are responsible for the ADA and all the other programs and services for individuals with disabilities that resulted from passage of this landmark legislation.  Because of things like curb cuts, accessible bathrooms in public places, and accessible public transportation, people with all kinds of disabilities are much more visible in all our daily lives.  When I was growing up, other than my brother, we only regularly saw one other boy with a visible physical disability.

In addition to the benefits of the ADA, the development of the Internet has had a profound effect on how people with all types of disabilities can communicate today. When we were kids, we only knew of one other person with our orthopedic condition and this happened by a stroke of good fortune: I was perusing the TV Guide one day and saw an ad for the TV show ZOOM which was featuring a girl with LS.  We had to write to the TV station that produced Zoom to ask that they contact the girl and her family to see if they would be interested in contacting us.  They were, and a flurry of letters soon went back and forth.  Today, I am friends with this woman on Facebook, as well as being connected with many other people who either have LS or are the parents of an affected child.  The ease in which people with all types of conditions can exchange essential information and provide support via Facebook, Skype, etc. makes having a disabling condition so much less isolating.

While there is certainly still much work to be done, as Emily shares in many of her blog posts, having a disability no longer precludes participation in the usual childhood recreations or adult occupations.  For example, new playgrounds are being designed to include wheelchair access so all children can interact just as all new public construction projects (and many private ones as well) follow the principles of universal design to maximize the population of people who can enter and conduct the business of daily living.  And with the continued efforts of advocates such as my wonderful daughter, the sky is the limit as to what can still be accomplished!