Today many services offer MRI scans for a fee. DNA testing services are getting better and better — soon they will be able to predict how likely it is you will get all sorts of diseases. Many worry that this will alter the landscape of insurance, either because insurance companies will demand testing, or demand you tell them what you learn from testing.
Many criticise the MRI scan services because they quite often show up something that’s harmless but which inspires a medical demand to check it out just to make sure. That check-out may be expensive or even be invasive surgery.
So people are suggesting, “don’t get tested because you don’t want to know.” However there is stuff you do want to know, and stuff that may be useful in the future.
I propose escrowed testing services that promise not to tell you, or anybody, certain things that they find. For example, they would classify genetic tendencies for diseases for which there is no preventative course, like Parkinsons or Alzheimer’s. Many would say they have no desire to know they might get Parkinson’s as they get older, since there is nothing they can do but worry.
The service might escrow the data themselves with the big added plus that they would regularly re-evalutate the decision about whether you might want to know something. Thus, if a preventative treatment comes along that is recommended for people with your genes, then they would recognize this and tell you the thing you formerly didn’t want to know. They would also track what new things can be tested, and tell you when a re-test might make sense as technology improves.
The information could also be escrowed with a trusted friend or relative. You might have a buddy or spouse who could get the full story, and then decide what you need to know. A tough role of course, perhaps too tough for a spouse, who would worry about your pending Parkinson’s almost as much as you. You can’t easily use relatives, because they share lots of your DNA, at least for DNA scans.
Of course, your doctor is an obvious person for this, but this goes against their current principles and training.
Of course there is a legal minefield here. One would need a means to provide pretty good immunities for the escrowers, while at the same time not allowing them to be totally careless. The honest belief that information was in the don’t-tell profile should be enough to provide immunity.
There is another risk here, of course, which is that strangers, even doctors, can’t be fully trusted with the final decisions on your health. You will be taking a risk that the 3rd parties won’t work quite as hard at solving problems or even paying attention to them as you would. In fact, you’re doing this because you would worry too much.
There’s another benefit to this. Many people, if told to expect something, will invent it. This is very common with things like drug side-effects. In order to avoid this, when I take a new drug, I don’t read the long PDR list of side-effects. Instead, I have Kathryn read them. Then I can wait until I truly sense something and ask if it’s a side effect, rather than expecting it. The same principle applies here, though that suggests you need somebody very close as your health escrow. Of course again your doctor would be the right choice here, so that when you went there to say “I’m feeling numbness in my fingers” she could say, “Ah, well now it’s time to tell you about this thing we found in your gene scan.” Possibly a system that lets the doctor search, but not read, the gene scan, could help.