Deaf British Babies: Morally Repugnant?

I have recently started listening to podcasts on my way to work, in an effort to become more aware of current events. As much as I have loved spending my incoming and outgoing commutes reading fiction, DC has a higher-than-average expectation of cultural literacy and I was beginning to feel ignorant and disconnected. It was OK as long as I was in school — “I’m working on my thesis” is a sentence that excuses all — but now things are different.

One of the first podcasts I turn to every morning, right after the NPR 7 a.m. five-minute news summary, is NewsPod from BBC Radio, which is a 20-30 minute mix of “daily programme highlights.” Last week it featured an excerpt from a “monthly disability talk show” called “Ouch!” The topic was the Human Embryology and Fertilisation Bill which, quoting BBC Health News, “will make it illegal to use embryos with a known genetic abnormality in IVF treatment when ones without the same defect are available.”

Let’s say you’re a couple facing fertility issues, and you’ve ended up with two viable embryos to choose from. (Yes, I am greatly simplifying the process, normally you’d have more than two, but this is not a science lesson.) One seems to be a perfectly normal healthy embryo. One seems to be a perfectly normal healthy embryo except that it will probably be deaf. The proposed legislation would mandate that you throw away the deaf embryo and implant the normal one. *

The Ouch! interview describes the process accurately (as a choice between embryos) and then devolves into a completely inane, irrelevant discussion about deaf culture and children’s rights. The entire discussion is framed as a “you cannot impose your choices on an innocent child” argument — you can’t decide to make your child deaf.

Both the interviewer and interviewee completely miss what’s going on here. The fact is, you are not making anyone deaf or not deaf. You have two individuals already in existence – you have a deaf pre-person and a hearing pre-person. The question is not “can you make a hearing pre-person deaf,” the question is “can you make it illegal for the deaf/blind/whatever pre-person to continue living.”

Now, IVF ooks me out in the first place, because when you get the point of having to pick your embryos, there’s the danger of wandering into “children as accessories” territory, which is a long post for another day. (Do you want a strappy sandal or a stiletto pump? Do feel like having a son or a daughter? Fries with that?) I can live with these decisions being made by individuals. But to make it a law? For the government to decide who gets to be born? That freaks out my self-governing American heart.

It’s not even like we’re talking about a major disability. The law, as written, doesn’t apply only to profound deformities, the kind that sentence a child to die at a few days old, or that leave a person vegetative for life. What parent would choose to implant those embryos, anyway? Although I don’t agree with some deaf culture advocates (including the parent interviewed by Ouch!) that being deaf is just as awesome as being able to hear, being deaf is far from debilitating. Deaf families hop into their cars and drive to Applebees just like everyone else. They are not drains on society and they require little special treatment. (TTY phones and sign-language interpreters, is that so much to ask?) The same goes for the other “known genetic abnormalities” that parents might choose over “normal” children.

And really, when you consider the frequencies with which these embryos even occur — and the number of parents who are going to knowingly choose them over “normal” embryos — well, is this really such a huge problem for Great Britain that they have to introduce a bill like this?

Finally, one last quote from BBC News/Health: “.. But to others… deliberately bringing a child with a disability into the world when one without could be born verges on the morally repugnant.”

Really. Morally repugnant? Really? Morally repugnant is forcing someone to give birth to a child they don’t want. But allowing a very small percentage of parents to make an unconventional choice as to which pre-person they want to share their lives and love with? That’s repugnant?

* For the record, I am completely pro-choice and I have absolutely no moral qualms with tossing out embryos. I’m just not afraid to use accurate descriptive language.