However, what has happened now is that we have a massive increase in autism, and it is not having the downstream effect of making children better. We should be seeing a slightly happier population, but all weâre seeing is worse mental health. We did something well-intentioned but thereâs no evidence that itâs working.
The reason itâs not working is because when you get to the very mild end of a spectrum of behavioral or learning problems, you have a balancing act between the benefit of being diagnosed along with the help you can get, and the drawbacks of being diagnosed, which is telling a child that theyâve got an abnormal brain. What does that do to a childâs belief in themselves? How does it stigmatize them? How does it affect their identity formation? We thought it would be helpful to tell children this, but the statistics and the outcome is suggesting it isnât helpful.
Youâre also worried about another aspect of diagnostics, which is overdetection. One example you give in the book relates to modern cancer screening programs that detect the disease at earlier and milder stages. But so far thereâs little evidence that these are actually beneficial to patients.
Every cancer screening program will lead to some people getting treatment when they didnât need to be treated. That will always be the case. What weâre desperately wrangling with is that we want to make sure we keep the number of overdiagnosed people down and the number of people who need the treatment up. However, the more sensitive you make those tests, the more overdiagnosed people you will have. I read in a Cochrane review that if you screen 2,000 women, you save one life, and you over treat somewhere between 10 or 20 women. Youâre always overtreating way more people than lives youâre actually saving. So the suggestion that we should do even more of these tests before weâve perfected the ones we have does not make sense to me.
I do multiple brain scans a week and so many of them show incidental findings. Even though Iâm a neurologist and I see brain scans all the time, I donât know what to make of half of them. We just donât yet know how to properly interpret these scans. We need to pay more attention to detecting symptomatic disease early, rather than trying to detect asymptomatic diseases that may never progress.
In some cancersâprostate cancer, for instanceâpatients can opt for watchful waiting rather than treatment. Should this be the norm for early detection?
If youâre going to go for screeningâand I donât want people not to go for the suggested screeningsâyou do need to understand the uncertainties and realize you donât have to panic. Of course, the minute you hear thereâs some cancer cells, the panic kicks in, and you want it out and you want the maximum amount of treatment. But actually, in medicine, a lot of decisions can be made slowly. There are watchful waiting programs.
I want to suggest to people that, before you go for the screening, know these uncertainties exist, so that you can decide before the test comes back positive what you think youâd likely want to do, and then you can take time to think about it afterwards, and you can ask for a watchful waiting program.
I think one of the solutions would be to call these abnormal cells that we find on screening something other than âcancer.â The moment you hear that word, peopleâs immediate reaction is to get it out, because otherwise they think they will die of it. Watchful waiting is just something people find hard to do.
Hear Suzanne OâSullivan speak at WIRED Health on March 18 at Kings Place, London. Get tickets at health.wired.com.