In addition to being a full-time editor of DDNews, I am the de-facto on-call editor for an anti-racism organization. And that would be, y’know, because my wife runs it and—at least in my experience—it’s not wise to deny one’s editing services to a spouse running a small-budget organization when it’s time to put out a newsletter or donor request letters.
Now, normally, my worlds of pharma/biotech and racial justice/racial equity stay pretty distinct and discrete from each other. However, a couple things reminded me this month of how almost everything overlaps at some point.
The first was a bit of news in my social media circles about how half of dermatologists say they weren’t trained to spot cancer on the skin of black people. The other item was a portion of my article on this month’s cover, “Building a better way of cancer modeling,” in which I mention the Breast Cancer Genetic Study in African-Ancestry Populations, which is largely concerned with trying to figure out why black women are more likely to die from breast cancer compared to white women and why they are more likely to be diagnosed with aggressive subtypes of breast cancer.
It reminded me of the fact that clinical trials typically suffer from a lack of proportional representation of non-white patients, something we’ve reported on in the past in this magazine, though not recently.
Now, this isn’t a surprise or a new problem. Heck, it wasn’t that long ago that women were hugely under-represented (and probably still are, at times) in clinical trials. And the reasons for racial inequities in clinical trials are many, from access to patients to patients’ access to information, and from distrust of the medical community to poor outreach and educational efforts about medical research—and more.
It does remind me of what out bimonthly columnist Peter Kissinger often calls “the tyranny of averages.” We get all these facts and figures about response rates and such, and often we neglect to consider that they are not representative of all people. People of different races might have more susceptibility to certain diseases or less response to certain drugs. Women and men can react differently to medications, just as women often present with “atypical” heart attack symptoms and girls with attention deficit disorder are often undiagnosed because they present “differently.”
But “atypical” and “different” aren’t always the right way to look at things. When we’re talking about large chunks of our population, we need to remember that distinctive traits are part and parcel of the human condition, not just socially but often biologically and genetically.
As they say, when all you have is a hammer, everything looks like a nail. As uncomfortable as it can be, we need to dig around for the right tools—or the right populations and right kinds of studies, something that Pete addresses this month in his column (click here to read), though from a different demographic angle than me.
We can and must do better to include all of our vulnerable populations in studies and treatment strategies. But it requires at times that we exit our familiar silos to take a broader view of the landscape around us.