…the new diagnostic tests are leading to a moral dilemma. Since there is no treatment for Alzheimer’s, is it a good thing to tell people, years earlier, that they have this progressive degenerative brain disease or have a good chance of getting it?
“I am grappling with that issue,” Dr. [Michael] Rafii said. “I give them the diagnosis ”” we are getting pretty good at diagnosis now. But it’s challenging because what do we do then?”
It is a quandary that is emblematic of major changes in the practice of medicine, affecting not just Alzheimer’s patients. Modern medicine has produced new diagnostic tools, from scanners to genetic tests, that can find diseases or predict disease risk decades before people would notice any symptoms.
At the same time, many of those diseases have no effective treatments. Does it help to know you are likely to get a disease if there is nothing you can do?
“This is the price we pay” for the new knowledge, said Dr. Jonathan D. Moreno, a professor of medical ethics and the history and sociology of science at the University of Pennsylvania.
Great article that touches on so many other physical conditions. I was diagnosed with a congental condition that doubled my risk of sudden cardiac death: from 1%/year to 2%/year. That diagnosis cost me my job, a decision I fought successfully. But I am fortunate in that regard. Do I wish I had had the original test conducted? Probably not.
My mother has dementia. Would I get tested for Alzheimer’s if I could, probably yes. While there is currently no effective treatment to many diseases, research continues. In the meantime I could prepare. I could record thoughts and memories before they are lost to me and my friends and family. I would savor the wonders of creation rather than focus on the unimportant. I would give more of myself before I had nothing.
Perhaps I should do that sort of thing anyway for I and we all are, in the end, mortal.
I would suggest some caution toward such tests. First there are issues of false positives and false negatives. And if one is tested for a condition that is incurable today, what is the true value of that knowledge? For something that might be 20 or more years off, will we really change our behavior for all that period of time? Might that cause us to miss opportunities that might arise from our current behavior? Does such knowlege constitute a “pre-existing condition” from a legal, insurance, employment standpoint? Could such knowledge in the world of digitized medical records affect how we are treated by others?
My mother also has dementia and I am sitting in her house watching her as I type this. Would I have wanted to know this about her many years ago? No, because we lived life as life came to us until the diagnosis came in. And now we have those memories to hold on to, even if she cannot.
I am reminded of the saying (my paraphrase), “it may not be right to do a thing, just because we can do a thing”