In Passing My Disability On to My Children Sheila Black offers a nuanced description of both the realities of and her mixed feelings about having passed on her genetic mutation to all but one of her children.
Several years ago, a relative of mine, who is quite religious in a way I am not, called me on the phone unexpectedly. She said she wanted to apologize because she had always thought that I should never have children; “God would not want you to have children” is how she put it. Yet now that I did have three of them — three “beautiful children,” she’d said — she wanted to let me know she had been wrong. It was a bit of an awkward moment, like when someone tells you look fabulous in a way that lets you know how terrible they thought you looked before.
I see both sides of this question. Is it moral to knowingly bring a child into the world with a condition which will cause them to suffer physical and emotional pain than a healthy child? Is it moral to genetically engineer the human race to weed out traits we find undesirable? Imma say yes to both.
A thing that I dislike about the evangelical Christianity I grew up in is how it tends to knee-jerk oppose life-improving technological progress on superstitious grounds. Think stem cell research. Suffering sucks, frankly. And now that we have embryo sorting technology, I don’t blame a parent for picking an embryo that seems like it will become a person who will suffer a lot less than the other embryo. I think selecting a healthy embryo for implantation and killing the unhealthy one is a reasonable, kind thing to do. There’s only so much womb in the end. If you choose to blindly risk bringing a child who will suffer greatly into the world when you could have taken steps to ensure you bring a child into the world who will likely suffer less, you are choosing to risk increasing net suffering unnecessarily.
Disease-specific abortion (which is, I suspect, how this normally happens) is something that I believe absolutely should be legal but would probably not do personally. Mostly because I probably wouldn’t abort personally in general (caveat: I would probably abort to save my own life).
At the same time that disease screening of embryos seems fine to me, I do feel it necessary to call that what it is: Eugenics.
Ole Wikipedia defines eugenics as “a social philosophy advocating the improvement of human genetic traits through the promotion of higher rates of sexual reproduction for people with desired traits (positive eugenics), or reduced rates of sexual reproduction and sterilization of people with less-desired or undesired traits (negative eugenics), or both.”
That’s eugenics 1.0. Eugenics 2.0: “Alternatively, gene selection rather than ‘people selection’ has recently been made possible through advances in gene editing (e.g. CRISPR).”
You as a parent making a choice about whether to screen for diseases probably aren’t thinking about the improvement of human genetic traits broadly. But your narrow focus doesn’t change the goal, which is making sure you pass better “genes” on instead of “worse” genes.
We’ve established what we are. Now we’re just haggling over the price.
While I do think using technology to reduce net suffering is a moral thing to do, I stop well short of saying parents are morally obligated to do so. For one, because it’s completely arbitrary where we draw the line. It it at suffering? Severe depression and anxiety are just as painful as XLH. Should depressed parents wait to have children until we identify the genes associated with depression and anxiety and screen for them?
One thing I found beautiful about the evangelical Christianity I grew up in is the spirit behind the so-called culture of life.
Embedded in that set of ideas is the idea that life is beautiful. All life. Just for being life.
A defining feature of the modern world is a massive increase in standards of living across the board. But in developed nations, we also see a stratification. Everyone is doing better than they were, but the well-to-do are doing much better than ever. There are some things everyone wants for their kids. Happiness, health, education, and opportunities. Children of the rich have far more of all of those things in America.
Well-meaning people have looked at the vast differences between the happiness, health, education, and opportunities for poor and rich kids and decided the thing to do was to encourage the poor to stop having kids and the rich to start. This makes sense. It’s moral. This, to the extent it’s possible to implement, would seem to reduce net suffering.
But the culture of life looks at the poor kids and sees the beauty the very fact of their lives. And I like this. Because I think parenting in America is too focused on happiness, health, education, and opportunities. It’s too focused on outcomes generally. Parenting in America is too much about responsibilities, about the sacrifices you must make to give your children the best lives possible, about not having kids at all if you can’t manage to do what’s required. Which is, again, totally arbitrary. How much money does it take to make having kids a “responsible” choice? It’s no easier to answer objectively or consistently than how depressed you can be and have it still be okay to have kids.
The focus on sacrifices and outcomes is a culture of competition. Because it’s all relative, even happiness, health, education, and opportunities. How healthy does a kid have to be before they are worthy of a chance at life? How happy? How smart? Well it all depends on where the bottom is and where the top is, doesn’t it?
But, like, what if it didn’t? What if bringing a kid into the world was just a choice. A morally ambiguous, full of pros and cons choice. A choice to be made individually. A choice to be celebrated, if with reservations.
I probably won’t have kids. For one, because I consider myself on the low end of the scale in terms of what happiness, health, education, and opportunities I could reasonably offer a kid. I think I’d feel guilty bringing a kid into the world who I couldn’t give the top-tier everything. I’m not sure that’s the right choice. I’m not sure that’s the right way to look at that choice.
And don’t take me to mean that I want to subsidize others’ choice to have kids. I don’t really care whether other people reproduce, certainly not enough to fund it.
I’m just not going to shit on sick, poor, unhappy people for having kids. Because there’s plenty of beauty in sick, poor, depressed life.
When I asked my children how they felt about the XLH I had passed on to them, both of them spoke of the disability as almost, though not quite, a gift. “It has made me not fit in,” Eliza said, “but it has taught me empathy.”
“I am sometimes bitter about being so short,” Walker said, “and about the pain, but I am very glad to be alive.”