ClinSeq

I went to NIH today as a "subject" (i.e., guinea pig) in their "ClinSeq" research study. My schedule called for me to arrive at 9 a.m.; my last appointment would be at 4 p.m. In the event, I got there around 8:50 or so and was heading home by 1:25. This is a very efficient operation.

Today's procedures:

• Sign-in
• Give blood
• EKG
• Nurse takes height/weight/blood pressure
• Talk about family medical history with a genetic counselor
• Give personal medical history to a nurse
• Echo-cardiogram
• MDCT scan

All of the procedures were conducted at NIH except for the MDCT scan, which was done across the street from NIH at Suburban Hospital.

When I signed up for this thing, I thought this was all there was to it: I'd spend a day there and in return I'd get a free echo-cardiogram and a scan (MDCT) of my coronary arteries. Well, yes and no. I got the free tests, and in 4 - 6 weeks I (and my doctor) will receive the results of the tests, but that is emphatically not all there is to it. These people are studying virtually ALL the genes in the body! The want me to come back a couple times a year for 10 years!

Which I think is cool.

Sort of.

Again, when I signed up, I thought they would collect information (including DNA) on me and on hundreds of other "subjects." Then, 10 or 30 or 50 years from now, when all us "subjects" are dead, they would try to correlate gene variations with causes of death. And they probably will. But it turns out that they already know a lot about (some) gene variations that are associated with disease. And they might find some such variations in these (or future) tests. "If we find something like that in your DNA, Mr. Larkins, we'll contact you and ask if you want to know what we've found." Well, now. That's a good question, isn't it?

My inclination is to say "Of course I want to know about it."

But if I know about it,

• Do I tell my brothers, who might share the same genetic variation? What if they don't want to know?
• I'll have to tell the other people who love me. They might well be happier not knowing that I'm likely to come down with, say, Alzheimers. Should I burden them with this information? In a case like this, ignorance really may be bliss.
• What do I do if the news is absolutely calamitous -- say, a 95 percent chance of getting Lou Gehrig's Disease? OK, I take up sky diving, but what if the damned chute opens every time? What do I do then?

There's lots more to say about all this, but I've got to go see our presumptive president confront Senator Strangelove in tonight's debate.

Update: (Sigh.) Score one for Strangelove.

Later Update: Shows how much I know. CNN and CBS say the good guy won!