I'm not saying that I should be the one to tell anyone what to do, but if somebody knew they were at increased risk of getting dementia playing a contact sport, I would say, "Hey, you know, maybe track is a better option!"
So when I was asking doctors why we aren't offering this to athletes, they said, "Well, basically, the thinking in the genetics community has been twofold. One: It's just predisposition risk. You either have this disease or you don't, and people have difficulty understanding that. And two: There's nothing you can do about it."
I've said, "Well, it's a risk factor. You tell people that smoking is a risk factor," and the doctors' response is, "They can stop smoking. They can't change their DNA."
And I've said, "Yeah, but they can choose not to play football! Or not to be a boxer!"
It frustrated me that the medical community was sort of thinking for the patients. It's true that if you learn that you have the "bad" version, not only are you at a greater risk for brain injury when you get hit in the head, but you're also more predisposed to Alzheimer's. You can't find out one without finding out the other, and some people might not want to find that out. But that should be a choice, I think. When I went around asking athletes, most of them told me, "Absolutely! I wouldn't hide from that information." None of them had any problem understanding that having the gene didn't mean they would get CTE. Only a small number told me no—most said it wouldn't make them retire or anything, but they would rather know than not know.
Now, there's a small number of people they're actually testing. They're offering it to parents and such. But it's still quite rare.
To what extent is that going to become a thing athletes and parents of athletes do routinely in the future? To what extent is that something they already do routinely?
Well, now there are these direct consumer genetic-testing companies, and they've now started to offer testing for that gene. I think that will grow quite a bit—although there are a lot of questions about how to regulate it.
But now these companies and this whole field of genomics are starting to offer testing for predispositions related to things like hearing, tendons, and ligaments, I think that's going to expand, and we should be having those conversations now, because there will be tricky ethical issues there.
The kind of testing that I don't think will expand or be that useful is people testing their kids to see if they'll be some sort of superstar. We're still so far off from knowing how to deal with that knowledge—at this point, you're so much better off just finding out by having them just try to play the sport.
In some cases, at least. For things like hypertrophic cardiomyopathy—the genetic disease that's the most common cause of sudden cardiac death among athletes—that testing is already there now. That just needs more awareness. If someone in your family drops dead, it's usually offered—or if someone goes into cardiac arrest and is revived, you can take their DNA, find out if they have the known mutations, and then you can test the rest of their family for it. Then instead of the rest of the family wondering if they're going to drop dead suddenly, or seeing a cardiologist every couple of months for the rest of their lives, they can know that they have it or they don't.