After about 30 years of meeting people every month or so for presymptomatic testing, a young man said something that I don’t think I’d ever heard anyone say before. I asked him what he would do differently if his test turned out to indicate the gene for HD. He replied, “I don’t think it would really change anything. I mean, either I have the gene or I don’t, and doing the test won’t change that.”
The reason this answer is unusual comes from the following experience. Think of the times when I have to give someone bad news about the testing. The great majority of people in that situation cry, or at least tear up ... and we all empathize with that response! In fact, if someone seems emotionally unaffected, we wonder why. Yet—and here’s the point—imagine that we were creatures of pure logic. For you fellow Star Trek fans, imagine you’re giving that news to Mr. Spock, or to Commander Data (although, yeah, Data doesn’t even have DNA—work with me here). Either of them would say, “thank you!” If you asked why, they’d explain that you’d given them information they didn’t have before. And if you asked “but doesn’t it bother you to hear that you have a serious illness,” they’d tell you that they apparently had it anyway, so why would getting the test results bother them?
This paradox makes me think of the following real-life analogy. Suppose someone told you that at some point in your life you are going to get sick and then at some point you will die. I think we might all have an emotional response before realizing that that isn’t really news. Since childhood we have known that everyone dies. As an insurance salesman friend of mine liked to remind me, “everyone’s contract matures." Yet if we’re healthy, we don’t go about thinking about our impending mortality—even though we all know we could get hit by a bus tomorrow. Why? Or, why do we wake up thinking of life not death?
Maybe our death is just too remote for most of us to worry about, even if, like me, we’re old enough that we’re closer to death than to birth. Or maybe some part of our brain does the math (intuitively) and figures accurately that although we could die at any time, for most of us the chance of that happening today is infinitesimal. Or maybe we just can’t bear to think about our mortality, so we ignore it, somewhat analogous to when we avert our eyes when we’re getting a blood draw or an injection. Or alternatively, maybe hope is a real and strong thing that sustains us from day to day, and when bad news like a positive HD test punctures that balloon of hope, we feel all at once the deferred negative emotions that hope had been keeping at bay. I suspect that some or all of these explanations operate in most of us.
So, as to the young man I mentioned above, I think his answer was exceptionally mature. But I wouldn’t argue very hard with you if you think instead that he’s ignoring his emotions, or at least he will be if his test is positive and he reacts the way he predicted he would.