PU #252 - WHEN IS INFORMATION NOT POWER? - On Knowing Less To Stay Sane
I had a difficult phone call from my sister last week. Something she thought I needed to know. The cancer she had been treating over the last year was genetic. A BRCA gene mutation which might run in our family. Don’t worry — she’s (as far as we know) on the other side of things now. But I am supposed to get tested to see if I have the mutation too. In women it can make breast and ovarian cancer more likely. In men, prostate cancer.
There’s a fifty/fifty chance I have the gene. If I don’t, it would surely be good to know. And if I do, it will mean I get the benefit of increased screening for prostate cancer through the NHS. So, my sister reasoned, it’s information worth knowing and I should get the test.
And I do agree with her. I shall get the test. But she could tell from my voice that I wasn’t happy as we talked.
“Information is power”, she offered. And the philosopher in me couldn’t help himself.
“Not always.” I answered back.
You see, information is used badly everyday. We see it with our obsession with data everywhere. Metrics of information used to supposedly justify this or that action — a redundancy, a promotion, an opportunity, a closed door — but which are, in fact, misdescribing the world they purport to represent and leading us to conclusions that have no actual basis in reality, even though they are supported by “information”.
Knowing you have a higher risk of developing certain cancers (or any disease) might well be powerful knowledge…but, with a certain kind of mind, it could also be disastrous.
My own mind, for example, has always been one which suffers from anxiety around health. I have had therapy for this anxiety, and have a range of tools for dealing with it, but certain triggers can still kick it off and, though the tools I have usually work, it still leads to an unpleasant few hours, days, or even weeks when spiralling. While I agree with my sister that getting the screening, if I have the gene, should appease my anxiety by catching anything untoward early, I still think, for someone like me, knowing for sure that I have a genetic mutation which increases the likelihood of developing a fatal disease for which there is already an incredibly high likelihood of developing for all of us anyway (if not prostate, specifically, there are many other terrible cancers out there which could develop in anyone), such information is more likely to lead to worry, panic, and anxiety, than to anything positive. After all, even if it catches such a cancer early through screening, it won’t undo all the preceding weeks, months, and years, of worry that this must be cancer, or that must be cancer…all because of the knowledge that I’ve got that terrible gene!
My caveat, of course, is that I do want the screening. In fact, I think that might be where the problem lies: I think we should all get the screening as a matter of course. Genetic mutation or not, cancer is famously unpredictable, ever evolving, and if we have the tools to spot it in someone early, why not use them as much as we can? Not just prostate cancer — any cancer. Test us for all of them. That information seems incredibly powerful!
But I am thinking in the theoretical ideal. In real life, such tests come at a cost. With limited resources available, the idea is that we use the tests carefully, only on those most likely to need them, and then roll them out more generally only when that general population is older and likely to yield results. All kind of blood tests, probes, swabs, samples, MRIs, etc. could theoretically be taken from all of us regularly, from a very early age, if we really believed in early prevention. But the costs would be astronomical. And it seems a colossal waste of money (potential life-saving be damned) to give such tests to children or teenagers when there is such low probability of them having these particular problems at that age (even though we know that a small minority, of course, do).
There is also another problem with such frequent testing, relating to my problem with the idea that all information is power. Sometimes medics find things when they look that, once found, need to be dealt with, or at least acknowledged, but which, had they not been found, might never have actually bothered you at all. Let’s say, for example, a benign mass is found which will never cause you any issues — once found, the knowledge it is there might well curdle into a low-grade worry that causes a small bit of unhappiness for the rest of your life anyway. (What if it does turn malignant?) Or, perhaps it will need to be removed, and in the process of removal some infection occurs that makes you very ill for a while. Or some other part of your insides are disturbed in the removal that leads to further, different, complications down the line?
This is not an argument that we should not get checked for things that may be wrong with us, but it perhaps is an argument to ask whether knowing everything that might be wrong with us is as helpful as it seems? Unless there is a clear cure, treatment, or concrete preventative measure that can be enacted, does having knowledge that several possible illnesses are more statistically likely for you than others actually help? Especially when it remains true that something unexpected can always happen too. While your eye is on your family history, genetic markers, or the recent scans you had, some other, completely anomalous, ailment can always blindside you from a different direction (or organ). Not to mention all the non-medical ways in which our lives can be tragically ended or altered forever.
Philosophically it comes back to the old question: if somebody had the information about when you would die, and what you would die of, would you want it?
Some people would. It might be nice to plan around it and not have to worry about all that other stuff. Heart attack at 65 — great! No more worrying about cancer or strokes! Nor should I worry too much about my pension plan. Hit by a bus at 30? A shame — but at least I won’t be wasting my twenties now working hard for the future.
For others though, rather than peace of mind, such knowledge might merely fester inside them, souring the good years in between. Could I prevent the heart attack by doing something different with my lifestyle before then? Could I avoid the fatal bus crash? We’re all going to go some way, and no way is particularly nice — why not leave it a surprise and spend the limited time we have alive thinking about other things?
Discussing the idea of God’s perfection with students this week, the idea was raised that our common ideas of perfection were ableist and prejudiced towards a particular view of human life. The age-old problem of God’s presumed omniscience clashing with God’s supposed perfection — if God is supremely perfect, God can’t fail, God can’t be ill, God can’t do wrong things, so how could God know what it is like to fail, to be sick, to do evil, etc.? Such debates are predicated on the idea that a perfect being wouldn’t be frail, human, weak, and mistaken. But perhaps perfection might come from being all those things and dealing with them in the right way? Being imperfect as perfectly as anyone possibly can.
A similar idea is found in Buddhism — the end of suffering comes only from recognising that there is no end to suffering. We don’t change the state of suffering, instead we change our relationship to that suffering. A life will end. A life will feature pain and disease. Some lives are luckier than others in that respect, genetically speaking. Some are more susceptible to bad things happening. But what matters is not how long or pain free the life is, but how it is lived, moment to moment. Do we enjoy the moments we have, or waste them trying to ensure more moments in the future? Moments, our current behaviour suggests, we shall also likely waste…
Again — this isn’t some head-in-the-sand post about ignoring the doctor and spitting on all of Western medicine. I’ll get the genetics test done when the letter comes through and give myself the curse of knowledge, whatever it is, just as I happily submit the blood pressure readings to see if I need medication and go to my asthma check ups each year. I was first in line for my Covid vaccinations when they arrived and I’ll take any screenings for cancer they’ve got going. Concrete information really can be powerful. Speculative information, not so much. And even then there is a question about our relationship to all this so-called knowledge. If only so much can be done with the information we are given by doctors, and ultimately it won’t save us from some future grisly fate, would it still maybe be better to stay in the dark on some things? To focus on other stuff and just enjoy the time we have?
On the one hand — I’d kick myself if I died of something easily preventable because I didn’t do the easy work. But on the other hand — I’d kick myself too if I wasted too much of my life fretting about things I didn’t need to fret about just because someone needlessly put the idea in my head that I should.
I think my sister’s call bothered me because it was forcing me to confront something I’d already come to realise myself as the investigations into her illness were underway last winter. It doesn’t take a genius (or a note from a geneticist) to say that if your grandfather and your mother died of cancer, and your sister is currently suffering from cancer, then a genetic propensity for certain cancers might be in your family. Indeed, it was in many ways already realising this that set me off on my health anxiety journey in the first place, as it started shortly after my mother’s death from multiple myeloma. But that knowledge seemed like something unhealthy to dwell on then, hence seeing the therapist. OK — so I’ll probably die of cancer one day. About fifty percent of us do. About the same percentage that there is I have the genetic mutation. Fingers crossed though that I get my gran’s genes instead and die of old age at nearly one hundred. Those potential genes are, after all, also in the mix.
Taking the test and potentially being told the chances of lucking out like my gran just got cut significantly seems, with a catastrophizing mind like mine, more like a form of self-harm, given I already suspect the worst. Such information might not actually be power; it might be self-sabotage instead.
To be told you’re genetically more likely to develop a certain type of cancer doesn’t preclude you from developing all the other cancers too. Nor does it outweigh the other threats to your life from other things in it — such as stress, carcinogens in our foods, air pollution, exposure to harmful substances at work, pre-existing health conditions, stupid drivers, etc. For someone predisposed to anxiety, the information just adds one more thing to worry about to an already very long list. Meanwhile it shuts the door a little bit further on some of the few sanity-saving glimmers of possibility that still remain.
Is information power? Not always. For some people, people like me, it’s maybe the information that kills you.
Author: DaN McKee
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