Sickle cell anemia (L), Tay-Sachs (R)
The recent news that a drug combination used in a trial was clearly effective on black heart-failure patients has made it possible that the Food and Drug Administration may approve a drug aimed at a single racial group for the first time.
In the NYT editorial today, “Toward the First Racial Medicine,” the breakthrough raises some ethical quandries this path of action can get us into.
The danger that any perceived differences might be used for evil – to imply superiority or inferiority for a particular racial group, for example – was simply too great. Thus it is a welcome sign of increasing national maturity that medical experts, both black and white, are now grappling openly with the issue of race as it applies to medical treatments.
That is a danger, but hardly a reason not to proceed. After all, there are conditions that are commonly known to occur more frequently in certain racial/ethnic groups, and are recognized as such, for instance sickle cell anemia. It occurs in about 1 in every 500 African-American births and 1 in every 1000 to 1400 Hispanic-American births, according to the U.S. Department of Energy Biological and Environmental Research. There’s also Tay-Sachs disease, a genetic disorder. The NIH says that it is more common in people of Ashkenazi (eastern and central European) Jewish heritage. The genetic mutation that causes Tay-Sachs disease is also more common in certain French-Canadian communities of Quebec, some Amish groups, and the Cajun community of Louisiana.
So, where does that leave the medical ethicists, politicians and just plain citizens/medical consumers on this front? I agree with the Times editorial:
Yet there are reasons to go slow in moving toward race-based medicine. The chief drawback is that race is too superficial and subjective a concept, mostly based on skin color, to match up well with any underlying genetic or physiological differences that may affect how an individual responds to a disease or a drug treatment. Medical scientists are using race as a crude surrogate for what they assume are genetic differences yet to be identified.
But there is considerable genetic variability within any racial group, so it is likely that the new pill may fail some black patients, while white patients who could benefit may not get it because they don’t fit the racial profile. The ultimate goal, still years or decades away, is to develop medical treatments based on an individual’s genes and life experiences, not on membership in some poorly defined racial or ethnic category. Race-based prescribing makes sense only as a temporary measure.
I can speak with some experience on this front. My racial/ethnic background is extremely varied, but I do know, for instance, that type II diabetes exists on both sides of my family, for at least two generations, and I am one of the few in my family on either side to receive the kinky hair gene. My gene pool represents the multi-culti phenomenon that is part of the colorful history of the United States. It’s nearly impossible to easily pigeonhole someone like me into any clear category, though I do, when I feel like it, check the African-American box to make someone else comfortable with clerical matters. The truth is that checking the box denies all the pieces of genetic history that makes me who I am — I have white American, West Indian (Barbados), white European, American Indian (Shinnecock, Lumbee), and possibly Chinese ancestors in my family tree. It’s harder for people in my boat to trace things like this back too far, but there are folks on both sides of my family trying to do so. What does that make me (other than a proud “mutt” — and a white supremacist’s embodiment of what is wrong with America)?
For the medical community, it’s a first step, but it is indeed a crude one. Let’s hope they don’t get sidetracked too far, since our population is becoming less ethnically and racially defined, not more so, no matter what the white separatist religious wingnuts desire.
I also posted the above as a DKos diary.