It’s 4pm on Christmas Eve and I’m sat in a hospital waiting room, wondering if I’ll actually make the last train back to my parent’s house for Christmas.
There’s tinsel draped with apparent randomness around and a little shiny Christmas tree behind the receptionist’s computer. The Christmas decorations seem to accentuate the silent desperation of the neurology department, not soften it.
I’m eventually called in and express the polite thanks to my consultant who is remarkably working this late into the holiday. He gets my latest MRI scans up on the screen and there’s my brain, in all its black and grey glory.
‘The lesion is the same as it was four, seven and ten months ago,’ he says. ‘To be honest, we think you’re a vomit.’ He smiles, pleased with himself. I like him. I’ve liked all the neurologists I’ve seen, they never patronise and always seem vaguely amused.
‘A V.O.M.I.T,’ he says, ‘a Victim of Modern Imaging Technology.’
They say what you don’t know can’t hurt you. Which isn’t generally the rule in medicine but it certainly seems to be here. This brain lesion of mine has kept neurologists scratching their heads for the past year.
It was discovered while they were looking for something else and their response has consistently been along the lines of, ‘ermmmm…we don’t actually know what it is…or what it’s up to.’
And has now transformed into, ‘ermmmm…we don’t actually know what it is, but it doesn’t appear to be up to much.’
So I’m happy.
Analysing to death
Once upon a time, you went to the doctor if you felt ill. If something physically changed. If you woke up and just knew that something was awry.
Now our society deems analysing individual data as a hobby bordering on a daily requirement. How many steps have you walked? How many millilitres of water have you drunk? How did you sleep? How many stairs have you climbed?
And what started off as sort-of innocent activity tracking to motivate us off the sofa and into the park, has turned into a full-blown metric addiction.
Now it’s less about hitting 10,000 steps and more about ordering a DNA test to see if you have any genetic markers for myriad awful things. There are companies popping up all over the place that promise to tell you everything from if you’re at least a little bit Viking (who doesn’t want that? I have red hair and freckles!) to whether you’re likely to get [insert whatever gruesome disease here].
In the UK we’ve never had a tendency for full body MOTs, as it were. The only people who typically got routine check ups were babies and the elderly. The general rule being, if you feel fine, you probably are.
But now feeling fine isn’t enough. Exercising, eating a balanced fibre-rich diet and sleeping 7–8 hours isn’t enough. We want more. We want a crystal ball, a road map of our future health. A certificate we can wave in the faces of our parents and say, ‘look! Look what shitty genes you gave me!’
Is it possible to know too much?
Supporters of genetic testing for those without any medical reason to do so, say it can save lives. It can highlight diseases that you are genetically predisposed to.
In a Guardian article¹, the co-founder of 23andMe (a DIY DNA test kit company) said that her husband discovered he genetically had a higher risk for Parkinson’s and thus started exercising more and drinking less caffeine.
But what does that suggest? That if he didn’t have that increased risk, he would be happy to stay sedentary and mainlining coffee? He joined a research group which can hardly be a bad thing for science but at the same time, what if you were predisposed to five different things? You wouldn’t have time to get your laundry done.
Testing DNA will undoubtably aid medical research, but what will it do for the individual? The NHS is already struggling under the weight of the ‘worried well’². My GP would probably roll her eyes so hard she’d fall off her chair if I showed up with a report from a genetic testing company, concerned that I have a 2% increased risk of XYZ.
I have an eye condition that has lost me an annoyingly large amount of vision in one eye. At my appointment last week my consultant said, ‘you’ll need to make sure your cardiovascular health stays in tip top condition for the rest of your life.’
To which I thought, ‘well…obviously. Surely everyone should do that?’
I don’t need a bizarre eye condition to motivate me into keeping my heart and blood pressure in top nick — which they are — that’s just common sense.
What concerns me is that if we start using the threat of illness to motivate us to live healthily, surely we’ve missed the point of our frankly incredible bodies?
Surely it’s not about living healthily to avoid illness and disease per se, but instead to stay healthy. I know those two things sound an awful lot like two sides of the same coin but it’s an attitude difference.
If I got a DNA report saying I had exceptionally low risk of developing high blood pressure, I wouldn’t say, ‘great! I can eat fast food every day!’.
That’s sort of like saying, ‘oh I’m healthy am I? Challenge accepted.’
Because if we use genetic predisposition as a motivator, surely that also means we’ll use the absence of genetic predisposition as a de-motivator.
And that’s not even taking into account the sheer stress of knowledge.
Once it’s pointed out, you can’t stop staring
I did not know I had a brain lesion for the first 29 years of my life.
And for the first few months of my new-found knowledge, while the neurologists were chewing their lips with furrowed brows, I was a little freaked out.
Did I really have this, ‘pretty large abnormality’ (thanks doc) hanging out in an ‘incredibly sensitive part of the brain’ (again, thanks doc)?
Now this possibly isn’t a great example of my point, because both myself and my little retinue of intrigued neurologists are of the impression that Brain Stuff should be deemed guilty until proven innocent.
But, in the words of my consultant, ‘if we didn’t have such incredible imaging technology, you would never have known about this and you’d have been saved all the worry.’
And I consider myself lucky. Not only that my brain is weird but fine, but that they’ve come to this ‘it’s probably been there all your life’ conclusion after a year.
But if I took a DNA test and found a list of predispositions³? It would feel like I was living with ticking time bombs with no eyes on the timer. That sounds a lot like water torture to me.
I’m not saying that we should turn a blind eye, but I do wonder if a line needs to be drawn somewhere. Because the more information we have that we don’t understand, the more stressed we’re going to be.
You only need to look at hyperbolic headlines to feel the health anxiety rising. I’ve see maddening headlines with outrageously presented statistics that would have any person thinking that eating carrots gives them a 24% risk of cancer. The abuse of medical statistics in the news is widely documented but it’s still stressful —( the statistician Tim Harford does an excellent job of getting to the bottom of hyperbolic stats in his BBC Radio 4 show More or Less⁴)
When you’ve got your 250-result DNA report, who’s going to explain it to you? Who’s going to breakdown what those percentages actually mean for you? There’s now an expanding industry of genetic counsellors⁵ — because chances are, when you get all those crazy looking results, you’re going to need talk to someone who actually understands the implications.
So where should the line be drawn?
This is the hard part and, to a certain extent, impossible to say.
I was part of a medical trial from 15–20 years old which eventually uncovered that I actually had a high risk strain of the very virus they were producing a vaccine against (no, the vaccine did not give it to me, when the randomised double-blind trial was unblinded, it transpired I’d had the placebo vaccine).
It was a condition that English NHS Trusts don’t test for until 25 years old. It’s impossible to say, but without that incidental discovery, I might not have even made it to 25.
So what does that mean? That getting tested for things you statistically don’t have is a good idea? In my case, in that particular incidence, yes. I had surgery and I’m fine. It was a frighteningly close call.
But is that incidence a good reason to be indiscriminately tested for every possible disease or predisposition? I don’t think so. It’s not that I want to bury my head in the sand at all, but I also don’t want to go on a lifelong search for things that aren’t there on the off chance that they are.
I don’t want to live looking for the thing that’ll kill me.
And what do those predispositions really mean when stacked up to the real world? If we start looking for genetic predispositions in an effort to prolong our lives, shouldn’t we be looking for lifestyle predispositions too?
Surely you’re statistically more likely to be killed crossing a road in London than you are in rural Scotland? Or perhaps pedestrians in high traffic areas look more carefully than those in low traffic areas?
Maybe living in a multi-storey house raises your risk of catastrophically falling down stairs than if you lived in a bungalow? Is there a lifestyle report I can get that tells me I have a 34% increase risk of death by stairs because I live on the top floor of my building?
There are so many things we can do to increase our odds of annual survival that don’t require an in-depth DNA report.
We can eat better food and exercise more. We don’t need a laboratory print-out to tell us that. We can seek out ways of living that are better for us as a whole. The body doesn’t just work on one level, if we start taking care of ourselves holistically and not just reducing the risk of the three red flags on the report, we might find that we’re healthier all round.
Of course we should seek out medical advice (from a doctor, not the internet) if we think something is wrong. Or if our immediate relatives have hereditary conditions.
But I won’t be getting a DNA report. Even if I am a bit curious. Because perhaps I do have a predisposition to a variety of nasties, but given that stress is a proven killer and I’m already a V.O.M.I.T, I don’t want to be a victim of unnecessary medical analytics too.