The concept of “race” occupies a perilous crossroads at this moment in American history. Some would argue that we live in a “post-racial” world since the election and re-election of a black President; but a quick read of the headlines shows that race relations still have a long, long way to go. You could also make a case that some of the people pushing the “post-racial” argument are doing so for explicitly or implicitly racist motivations—i.e., to hand-wave away any built-in, systemic disadvantages that keeps some people from getting ahead in life.
Or, in the chronic illness community, to funnel funding toward diseases such as cystic fibrosis (CF) that affect primarily people of Northern European (read: Caucasian) descent.
At the same time, the very notion of “race” as a way to look at people of various ethnicities is itself something of a misnomer with an unfortunate history—all of us, regardless of our ancestry, are members of the same human race. That we divide humans into different races based on heritage has more to do with our forbears justifying institutions like slavery and discrimination by arguing that those who weren’t of European stock were… something less than human.
Good RIDDANCE to those days and to those bastards who embraced (or still embrace) those arguments. But while we should all aspire to the bare minimum decency standard of treating everyone the way we’d want to be treated, there’s a difference between being color-blind and genetics-blind.
Cystic Fibrosis, Sickle Cell Disease, and DNA-Kits. Oh, My!
That’s because our ancestry can hold key genetic differences that determine our susceptibility to a whole range of diseases, including cystic fibrosis, and predict our response to different treatments.
Greg Hall, an assistant clinical professor at Case Western Reserve University in Cleveland, Ohio, has a great opinion piece about this you should definitely check out. In it, he breaks down some of these genetic differences and how the healthcare community has responded (or hasn’t responded) to them. For example, we know that people with African ancestry are at much greater risk of sickle cell disease, while those of Northern European ancestry are more prone to cystic fibrosis. And while both groups are susceptible to various types of cancer, the rates of occurrence, aggressiveness, and even response to treatment can vary wildly.
Why that’s the case is largely a mystery—you could argue that it has to do with a complex mix of climate, inheritance patterns, and gene mutations. But the “why” matters less than knowing what to do with that information. And that’s where healthcare professionals and patients need to do a much better job of communicating with each other.
According to an NIH study, many physicians are reluctant to talk to their patients about the links between race/ethnicity, genetic predisposition to disease, and treatment decisions. This is perplexing when these links are known or well established; it’s extremely troubling when it can lead to patients being prescribed treatments that aren’t appropriate for them, or when potentially life-saving tests are ignored.
Some of this can be pegged to a pure numbers game. When doctors are making screening or treatment recommendations, they look at the totality of patients and what works for the majority. So while some diseases may occur at a lower rate or be less aggressive in one population than another, the “majority rules” approach means that physicians aren’t looking at tests or treatments that are proven to work in a smaller, minority subset of patients.
Clearly, this approach isn’t sustainable in the long run. Even if we accept the best-case scenario, that this is the result of healthcare providers being unable to keep up with every single genetic nuance of every patient, there has to be a way to tailor healthcare approaches to the individual. That’s where the partnership between patient and provider can really make the difference.
And with the proliferation of home genetic testing services like Ancestry DNA and 23andMe, patients have more tools than ever at their disposal to start an informed discussion about their own, individual genetic risks. So even if “race” itself stands at a crossroads, maybe the path forward for genetic health will be much clearer.