In 1983, nearly a decade before the Human Genome Project was even started and two decades before it was completed, scientists mapped the chromosomal abnormality responsible for Huntington’s disease.
The disease was then, as it is now, both incurable and intolerable: typically an inexorable descent into cognitive and neurological dysfunction, usually beginning in middle age and ending only after a long period of profound decline — often involuntary movements, followed by the inability to talk or communicate or, eventually, move.
When a predictive test was first introduced in 1986, it was expected that perhaps as many as three-quarters of those at risk would choose to take it to discover what lay ahead for them — to be relieved or to begin planning, but in either case resolving uncertain anxiety into a more concrete sense of medical fate.
Instead, the Irish neurologist Suzanne O’Sullivan writes in “The Age of Diagnosis,” published this spring, roughly nine out of every 10 at-risk people offered the test around the world decline it — preferring to live with ignorance. Perhaps, she suggests, we’d all be better off if we followed their lead, embracing uncertainty and ambiguity rather than always rushing to diagnose every deviation from “normal.” A collection of intimate case studies somewhat in the tradition of Oliver Sacks, “The Age of Diagnosis” ranges widely, recounting the stories of patients reckoning not just with Huntington’s but also with cancer and Lyme disease and long Covid. But it delivers its takeaway message boldly: that in our eagerness to help, we have grown too promiscuous in our impulse to pathologize.
For certain conditions, O’Sullivan suggests, you can tally the cost in excessive, sometimes counterproductive care: Reports have indicated that perhaps one-third of breast cancer treatments are unnecessary, that certain prostate-cancer screening programs have saved relatively few lives, and that what is now called “prediabetes” may resolve itself without any intervention in nearly 60 percent of cases. In the realm of mental health, some clinicians and researchers worry that diagnosis can be “self-fulfilling,” through what is technically called “iatrogenic” risk: that the very fact of identifying a disorder can make patients feel less well, less capable, more burdened and less independent than when they walked into the doctor’s office wondering what the hell was going on.
Some researchers, though, have emphasized the inverse phenomenon: that patients are relieved to have a name and feel empowered by a diagnosis, even if there isn’t anything for them to do about it. And for me, “The Age of Diagnosis” is too broad a polemic — given how many afflictions remain mysterious, how much suffering endures without a name, and how often we underdiagnose and undertreat even well-understood conditions. But the book very helpfully puts its finger on what is, I think, a key to understanding an awful lot of modern social panic.
Almost every week, it seems, we read news of some new epidemic — medical, psychological, social. Taken together, these alarming trends look like an enormous material shift: Something fundamental must have changed in the world if so many are now suffering so. But simultaneous crises may also be part of a broader story: We are simply looking harder and more expansively for malady and disorder, and as a result identifying more and more people as ailing or atypical.
Others have called this diagnostic inflation or diagnostic creep, and it has formed a subgenre of research and writing on health for a decade or two now. In 2009 Atul Gawande wrote a long article on the subject for The New Yorker, emphasizing the burden of overtreatment on providers and patients, called “The Cost Conundrum”; in 2015 he delivered a follow-up, called “Overkill.” And, as O’Sullivan notes, the list of medical conditions whose rates have risen sharply over the last couple of decades is numbingly long: “cancer, genetic diseases, dementia, hypertension, hypercholesterolemia, diabetes, osteoporosis, kidney disease, polycystic ovarian syndrome, endometriosis, pulmonary emboli, aortic aneurysms, chronic Lyme disease. And so many more besides.”
Each of these conditions implies clinical consequences and, for the patient, an avalanche of new personal meaning. But there is a social consequence, too, when a larger share of people get tagged with medical conditions and disorders; we tend to think the problem is growing, not just that it is being identified much more effectively, comprehensively, perhaps even excessively. Even when we acknowledge some of the contextual changes — diminishing taboos, more attention paid to certain kinds of struggle by more empowered mental-health bureaucracies, the subtle drift of social mores — we still tend to identify the trends as evidence of a growing problem. When you see the stats and the spiky charts, they retain the power to shock and alarm.
Perhaps the signal example is autism, whose spectacular rise in prevalence is a matter of renewed popular salience, thanks to MAHA, Robert F. Kennedy Jr. and particularly Kennedy’s war on vaccines. Indeed, a quick glance at the raw data suggests a harrowing upward curve, with autism growing roughly 60-fold since the 1990s. But as the psychiatrist Allen Frances wrote last month in a guest essay for Times Opinion, the stark rise has relatively little to do with environmental contamination, vaccines or even an increasing incidence of autistic symptoms themselves — and much more to do with the way diagnostic guidelines have evolved. In countries where we have good longitudinal data — Sweden, for instance — there’s been no meaningful increase in symptoms of autism even as diagnoses have risen quite quickly. A global review found no clear evidence for a rise in prevalence between 1990 and 2010. It’s not just that the explosion of autism in recent decades doesn’t look all that mysterious; there is a pretty strong argument that there hasn’t been any big increase at all.
The same rough trajectory is shared by many other diagnoses, and though not all have grown at similar scale, some have. Between the 1990s and the mid-2000s, for instance, bipolar disorder among American youth grew about 40-fold. In the early 1990s, the number of American children diagnosed with A.D.H.D. rapidly doubled, then kept rising, so that today roughly seven times as many American adolescents have been diagnosed than had been in 1990. Americans report 50 percent higher rates of depression since 2015, according to Gallup. Rates of PTSD among children more than doubled just between 2013 and 2017, according to one report. A study of more than 390,000 college students also found that rates had more than doubled between 2017 and 2022.
That last figure may spark another set of associations for you, since the last few years have produced a wave of concern about the mental health of American teenagers and young adults, mostly focused on the possible harms of smartphone use and secondarily on the social and emotional challenges of the pandemic and our pandemic response. And in fact, among college students, diagnoses for anxiety and depression have more than doubled since 2010 — an intuitive-seeming sign of a genuine crisis. But among those same students over that same timeline, diagnoses for schizophrenia have grown by 67 percent and diagnoses for bipolar disorder have grown 57 percent. A.D.H.D. diagnoses are 72 percent more common among American college students than about 15 years ago as well.
This pattern doesn’t mean that each trend is meaningless, of course: Even in the midst of diagnostic inflation, genuine incidence may well be growing, and many clinicians with experience spanning decades do report distressing trends among their patients. But taken altogether, the whole bundle of similar trajectories suggests that we should probably consider each increase not in isolation but as one part of a larger phenomenon — which is to say as something other than a perfect X-ray of the modern condition or exceptionally strong evidence that human experience in the world is rapidly changing.
And if a flood of new diagnoses yields an intuitive sense of social despair, in certain ways it offers a hopeful picture, too — with every instance of overdiagnosis also a kind of expression of optimism that, in our new golden age of medicine, we may soon find a cure. Or stumble on some treatments, at least.
In fact, a new breakthrough for Huntington’s was announced just a couple of months ago — an approach to using the gene-editing technique CRISPR to recode the DNA that produces the disorder. The breakthrough was laboratory-scale, and limited to mice — likely many years from human application, even if it all pans out. Widespread use would be even further off. But it’s also a reminder that if our diagnostic categories are more fluid than we tend to acknowledge, over long enough time horizons our treatment protocols are, thankfully, too.
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