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There’s an idea in linguistics known as the Whorfian hypothesis. It proposes that language is inexorably linked with how we perceive and think about the world. The classic argument is this: an Inuit person, possessing different names for snow, has the ability to think about, and even see, subtle differences in snow that speakers of some other languages do not.
Could the same apply to biomedicine?
Last week, a panel convened by the US National Institutes of Health (NIH) released a series of recommendations about how best to study and diagnose a common hormonal disorder in women known as polycystic ovary syndrome (PCOS). At the top of their list: a call for a name change.
It might seem counterintuitive that a name could be critical to scientific investigation. After all, a disease such as PCOS, which affects one in ten women of reproductive age and is a major cause of infertility, is still just that—no more or less common, no more or less severe, regardless of the name. Still, the semantics of a particular moniker can have potential repercussions, from levels of research funding to how patients find the right doctor.
PCOS affects an estimated five million women in the US and encompasses a range of symptoms, including high levels of the male hormone androgen, insulin-resistance, an increased risk of type 2 diabetes, abnormal hair growth and growths on the ovaries. However, little is known about the underlying causal mechanisms of the disease. As a result, there are currently no cures, only treatments for symptoms. Combined with the fact that many women express only some of these symptoms, the diagnostic criteria for PCOS are still under debate.
A distraction and an impediment
Late last year, the NIH called for an independent panel—four experts not involved in PCOS research—to assess this issue. Over the course of the December 2012 workshop, the panelists soon came to a realization: “We believe the name ‘PCOS’ is a distraction and an impediment to progress. It causes confusion and is a barrier to effective education of clinicians and communication with the public and research funders,” panel member Robert Rizza, executive dean for research at the Mayo Clinic in Rochester, Minnesota, said in a teleconference last week unveiling the committee’s findings.
After reviewing the current state of research and different diagnosing standards, Rizza and his colleagues concluded that the presence of “polycystic ovary”—which is actually a misnomer, as the numerous ‘cysts’ on the ovary are really immature eggs known as follicles—is not sufficient to diagnose PCOS. Some women with excess follicular growth show no signs of having the disease; others show some combination of symptoms but have no ovarian abnormalities.
In their report, the panelists agreed with the relatively-contentious ‘Rotterdam criteria‘, which require patients to have two out of three major symptoms—increased androgen levels, irregular periods, and “polycystic ovary”—for a diagnosis. Therefore, they wrote, “It is time to expeditiously assign a name that reflects the complex metabolic, hypothalamic, pituitary, ovarian and adrenal interactions that characterize the syndrome,” and not just focus on one particular symptom. But being outsiders to PCOS research, they declined to propose a new name.
“Our feeling was that this was the right time to rebrand,” panelist Timothy Johnson, chair of the department of obstetrics and gynecology at the University of Michigan Medical School in Ann Arbor, told Nature Medicine. “The new name would really make people think about the disease in a broader way, do research in a broader way and get a broader range of funding.”