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.

Familial Searching: Making CSI a Family Affair

The Wall Street Journal is reporting a new forensic technique in Great Britain – familial DNA searching. Supported by a DNA database, to which anyone arrested must contribute, the bobbies run a sample (of blood, semen, hair, etc.) left behind by their wanted criminal. If they don’t find a match, they look at the close, possibly related matches, and try to find the criminal by interviewing his or her possible relative.

The article includes the predictable points…

  • “DNA is the best kind of forensic evidence there is — it’s better than an eyewitness account.”
  • “The Home Office, which oversees the police forces of England and Wales and their combined DNA database, say those who are innocent have nothing to fear from providing a sample. They say retaining this evidence is no different from recording other forms of information such as photographs and witness statements.”

… and counterpoints:

  • “Unlike old-fashioned fingerprints, [civil liberties groups] say, DNA contains health and hereditary data such as paternity markers that could be misused.”
  • “[Civil liberties groups] say a DNA-based “ethnic inference” test can provide uncertain predictions about the race of potential suspects that may mislead the police or reinforce existing prejudices.”

It seems that few people object to retaining DNA profiles of convicted criminals. It’s the involvement of innocent people — both the ones who were arrested but let go or acquitted, as well as the relatives of the perpetrator-in-question who are likely not involved with his or her crime.

Familial searching doesn’t present a change in basic police procedure. The police are always going to question relatives of a suspect.

On the other hand, they usually know who their suspect is first.

Collecting DNA is not terribly different from collecting fingerprints or retinal patterns.

On the other hand, you can’t (as far as I know) determine a biological relationship between people based on fingerprints or retinal scans.

For better or for worse, this is going to happen. People (in the United States, at least) are going to be furious about it, but someday, eventually, we are all going to have a DNA sample attached to our entry in the national ID database. It’s just a matter of time. Instead of fighting it wholesale, we need to be sure that the we properly bring the definition of “probable cause” and “unreasonable search and seizure” into the 21st century.

The Gene Police [WSJ]