I was a middle-aged guinea pig
It also kind of made me feel like a reprobate.
It happened like this: A few weeks back, I came home to find a letter stuffed in my mailbox explaining that a group of researchers was seeking an adult woman to match against another individual in the neighborhood who'd had a cancer diagnosis. As far as I could figure, it was an epidemiology study in which they make lots and lots of similar matches and try to tease out lifestyle and other factors that may have a bearing on cancer risk.
I ummed and awwed for about a week, and then finally sent a form back with an agreement to be interviewed.
I met the interviewer, a nice young girl, around the corner from my work in a small coffee bar -- I'd considered the newspaper cafeteria for a brief moment, but I anticipated some questions of a personal nature, and I didn't particularly relish a colleague or the publisher sitting in the next booth as I answered queries about gynecology or, um, romantic history.
She did indeed ask all kinds of questions along those lines. And about exercise. How many hours a week? For how many years? (It was tempting to mess with the numbers a bit, but I’d told myself I wouldn’t. So I didn’t.)
All kinds of questions about medications. I had no idea there were that many pain meds on offer — I answered "no" to pretty much all of those, and boy did I feel good about myself. Not for me any-lily-livered reaching for Aleve or Tylenol every time I got a hurting head. Drugs? Me? Clearly I am made of sterner stuff.
Then came questions about alcohol. Ah. How many beers? How many a week? For how many years? Starting when? And wine? How much? Starting how long ago — and how often?
Ever smoked? (Um.)
You’d think I would have gotten lucky and the nice young interviewer would have asked about my diet, which is pretty darn virtuous these days. Did I get a single word in edgeways about the lentils and the cruciferous vegetables and the tofu and the turmeric and the apples and the tomatoes, cooked up with low-salt broth into stews that most normal people would find nigh-on inedible? Nooo.
There are a few things I noticed about the experience:
One is: I’m all for research. And it feels good to offer even some small thing to help people understand a horrible disease. And this is epidemiology — just the gathering of data. Yet I hesitated. When I had to decide whether to grant access to my medical records, I hesitated again. But in the end, I concluded that if my insurance company had access to them, why the heck would I care if they were locked in a safe with an anonymous number at some university?
Another thing: It is awfully hard to recall what you did last week, let alone what you did three decades ago. This all continues to make me wonder how accurate epidemiology can be. I expect scientists make allowances for the fact that estimates are likely to be low-balled or high-balled or not super-precise. But I wonder. Some folks might tend to exaggerate out of guilt. Others to downplay their vices to look more virtuous. Maybe we even each other out.
And — those interviewers seem to be very well trained. Not a trace of judgment there. I had steeled myself to be truthful, but it helped that she wasn’t going “HOW many beers?” and that her eyebrows seemed glued in a neutral straight line on her face. I wonder what the training is like. (The famous sexologist Alfred Kinsey took especial pains to drill such neutrality into his researchers, apparently, and do you wonder why?...)
Finally, by the end of the interview I wanted to tell her stuff. This was my moment! My moment in the spotlight! Maybe me, my genealogy and my wastrel ways held the ovarian cancer clue! Did she want to know about my missing kidney? Or my older brother's childhood episode of idiopathic thrombocytopenic purpura?
We’re meeting tomorrow to measure my waist-hip ratio and I’m gonna donate some of my saliva.
And then I very much fear she'll be done with me.
-- Rosie Mestel