Your health is your health

By Razib Khan | March 7, 2013 3:57 pm

A quick personal story. I have a treatable autosomal dominant condition. For the non-geneticists, that means any of my children have a 50% chance of exhibiting the trait. Even aggressive treatment is not usually initiated until one is in elementary school. But we want to know now, just so we can know (we plan to have more children soon, so we want to anticipate medical expenses or lack thereof, and well, just to know). When my wife went to the doctor today for a routine checkup for my daughter she asked for a blood test to confirm that my daughter exhibited, or did not, exhibit the symptoms (this is not a common SNP for what it’s worth).

Though the doctor was skeptical of the effectiveness of the test at this age, she also (according to my wife) decided to give my wife a lecture on the appropriateness of testing. Here’s what my wife emailed me:

“she then spent a lot of time educating me about how you (read SHE) wouldn’t ever want to know the status on something like that that you knew was a distinct genetic possibility up until right at the moment when you were going to take a therapeutic or preventative step if the status was positive.”

God knows how the doctor would treat someone who was from a less socially advantaged group, or who was not college educated (and wasn’t married to someone who knows a bit about medical genetics).

Addendum: To be clear, there was going to be a blood draw for another reason, and so she just wanted this extra test added to the panel. It’s a pretty standard test for adults, so I know it’s doable.

CATEGORIZED UNDER: Medicine
MORE ABOUT: Medicine
  • https://delicious.com/robertford Robert Ford

    I’m guessing she said that because she assumed the patient wouldn’t want to be unnecessarily preoccupied with anxiety about it(?) If that’s the case I’d suggest that it wouldn’t matter cuz I’d be concerned about it anyway.
    I took a DNA test for baldness in ’06 to see if taking baldness meds preemptively would be a good idea. Waiting the 6 weeks for the results was excruciating. I just wanted to know immediately! The results said that I had a 95% chance of going bald, which SUCKED, but at least I was able to mentally prepare myself for hair loss (which happened *very* soon afterward.)

    tl;dr: Yeah, I’m stone bald.

    • sf

      dutasteride ?

  • Karch_Buttreau

    Many people would rather be willfully ignorant about a potential problem than know about it. I’ve seen it up close, unfortunately.

    Here, the doctor is imposing her personal views (of not wanting to know) on her patients. I think I would have to draw the line there and call that doctor out as you did.

  • Jeremy

    Your condition sounds treatable, not life threatening or severely debilitating. It’s reasonable to avoid the anxiety (like R. Ford said) of knowing. Is the condition curable or could you reduce the severity? If not, there is no point in knowing beforehand.

    What if the test had been positive? Would the knowledge have a benefit? Or just general worry? (This not being good for your health).

    As well, insurance companies cannot test your genotype. However, they can ask if you have been tested and if you know the result.

    To clear, I am not a physician. I’m working on a Ph.D. and know a lot about medical genetics and its social implications.

NEW ON DISCOVER
OPEN
CITIZEN SCIENCE
ADVERTISEMENT

Discover's Newsletter

Sign up to get the latest science news delivered weekly right to your inbox!

Gene Expression

This blog is about evolution, genetics, genomics and their interstices. Please beware that comments are aggressively moderated. Uncivil or churlish comments will likely get you banned immediately, so make any contribution count!

About Razib Khan

I have degrees in biology and biochemistry, a passion for genetics, history, and philosophy, and shrimp is my favorite food. In relation to nationality I'm a American Northwesterner, in politics I'm a reactionary, and as for religion I have none (I'm an atheist). If you want to know more, see the links at http://www.razib.com

ADVERTISEMENT

See More

ADVERTISEMENT

RSS Razib’s Pinboard

Edifying books

Collapse bottom bar
+

Login to your Account

X
E-mail address:
Password:
Remember me
Forgot your password?
No problem. Click here to have it e-mailed to you.

Not Registered Yet?

Register now for FREE. Registration only takes a few minutes to complete. Register now »