Wednesday, September 19, 2007

Genetic Tests Offer Knowledge, Not Wisdom

It was a few years ago, and the blood test for herpes had just come out. I was all excited. I am normally a champion sleeper, but every now and then I get anxious and find myself up and petrified at 2 a.m., stranded in an unsafe and frightening world. One thing that occupies my mind during those times is the fear that I've unwittingly passed on STDs. It seems like such a crummy thing to do.

So at my annual check-up I tell the doctor that I'd like to be tested. He talks me out of it. He says, "Look, you're in a relationship, there's nothing really to be done about it, so many people have this, better just to leave it alone."

I went along, more being a passive moron than out of any conviction by his arguments.

The title of this post is the front page headline for this Los Angeles Time story this morning.

The second paragraph in (almost) its entirety: "One-quarter of fetuses found to have Gaucher disease were aborted over an eight-year period, even though half of all children with the metabolic disorder will never experience any symptoms . . . The rest can lead normal lives with treatment."

Eugenics is, obviously, creepy, but I will note that in the twenty third paragraph we learn that four abortions out of sixteen pregnancies made up that one-quarter figure.

So one of the responses to this is that testing shouldn't happen, or, from the L.A.Times's paraphrase of one doctor's response, "given the ambiguity inherent in some genetic tests, they should not be given for diseases that are imminently [sic?] treatable."

It strikes me as such a funny message, and one that only really gets put forward in the medical and national security contexts: You can't be trusted with this information. It, in fact, says nothing good about you that you want this information. You, given this information, will go buck-wild.


The Secretary said...

I think you scared off your regular commenters with the mention of herpes.

Captain Colossal said...

Herpes is scary. But not to doctors, apparently. Should I have run the poison oak picture again as well?

The Secretary said...

I think that would have been a mistake. No one wants that.

Noko Marie said...

This regular commenter was scared off not by herpes but by the daunting task of saying something sensible about this recent news story about breast removal, which seemed to raise related issues.

The story, from the NY Times, is here

Women who test positively for the breast cancer gene are having their breasts removed. Even before having children. I'm not sure what to say: it seems too extreme to me, but then, I have no family history of breast cancer, and I haven't been tested. But I think probably I wouldn't get tested in any case.

There's an incredibly sad moment in the story where the featured woman is talking with her new-ish boyfriend a day or so before the operation, and she reminds him it means she won't be able to breastfeed. He is surprised, upset: "I thought you were having breast reconstruction?!" He didn't realize.

Captain Colossal said...

I clicked on the link, which may have been a mistake.The whole breast removal vs. ovary removal aspect of it, the crazy relatives ("I'm so sorry you have to be so scared of this disease"?) -- my head, it spins.

See, I don't know if I would get tested for that, because it's not transmittable and you're not making choices for somebody else's life. But I think I would resent it if they told me not to get tested; that I couldn't handle it.

Gripping stuff.