What this post is not: a value judgment of parents who grew their families with IVF.
What this post is: a response to some of the ethical concerns raised by new developments in reproductive technology.
This tweet featuring a screenshot from a New York Times article caught my attention recently. Genomics researcher Noor Siddiqui asked a series of provocative questions that strike fear in the heart of every expectant parent:
What if your baby never walks? What if they are never able to live independently?
What if you could have stopped it…but chose not to?
That’s the question @OrchidInc’s embryo screening forces.
You optimize everything… career, diet, skincare… but you’re going to chance it on your child’s genome, one of the most significant determinants of their health?
There’s so much to unpack from these questions, and there are worthwhile discussions to be had about disease prevention (did you know that some rabbis refuse to officiate weddings for couples that carry the Tay Sachs gene?). I cannot speak to the heart-wrenching experience of watching a child suffer from an incurable disease, so I don’t want to pass judgment on what untold numbers of families experience every day.
My ethical concerns about IVF aside, the desire to spare innocent children from a lifetime of suffering is noble and good.
What stands out to me here is the casual treatment of genetic screening as one more thing to “optimize” in the same manner as career, diet, or skincare. The implication of not doing so, Siddiqui implies, could be considered parental negligence.
I have to admit, I was relieved to see many comments on this tweet denigrating Siddiqui’s proposal, even going so far as to label it a modern, socially acceptable form of eugenics (I can’t say I disagree):
What if learning how to overcome struggles is what defines the human condition?
You’re creating a baby factory and the embryos you bring into the world that are deemed “not good enough” are destroyed. Open your eyes. Don’t do this.
Eventually you’re going to need to explain to people living with these conditions what exactly you mean when you say “could have stopped it.” You aren’t curing diseases, you’re culling those who have them.
This isn’t for the disabled…. it’s for the people who care for them.
Destroy your less than perfect children, because you are God and deserve the very best.
There are many comments from chronically ill or otherwise disabled people stating that, as challenging as life has been for them, they are grateful to be alive and are still able to experience joy.
My fear with reproductive technology like this isn’t just eugenics (I think it’s naive to assume that no one will ever use it for that purpose), but promoting the idea that a life that involves suffering is one not worth living.
The truth is that parents can select the healthiest of embryos, and still end up with a medically complex child later in life. Any one of us is one accident or illness away from becoming medically fragile and dependent.
My father lived a full and healthy life for over five decades before he died of cancer. We don’t know the full effect that every life will have, nor can we predict which struggles will be used to communicate a larger, more powerful message that new life can be forged from the agony of death.
The original tweet reminds me of just how counter-cultural the gospel is in our modern world. There’s no shortage of offensive, “outdated” doctrines that turn many away from Christianity. But the idea that suffering of any kind can have redemptive purpose is particularly outrageous.
Let’s not kid ourselves: these researchers and pioneers of the field may have some noble intentions, perhaps based on their own experiences with chronic illness. But a big part of their drive is also to make money. Nothing drives good advertisement like fear of what can happen if you don’t use this product.
Profit seekers are pushing a powerful, convincing narrative about what defines a life worth living. Fortunately, it’s not their definition that matters.
Photo by National Cancer Institute on Unsplash
