This Washington Post article illustrates that the widespread conceptual confusion over what race is can be bad for health care:
Race reemerges in debate over ‘personalized medicine’
By Rob Stein
Federal examiners have rejected patents for genetic screening tests because the applicants did not explore their effectiveness for different races, adding to the debate about whether race has scientific validity in modern DNA-based medicine.
Presumably, Patent Office staffers got a memo encouraging them to make sure that genetic tests work on minorities and aren’t just being optimized for whites. But this upsets the Race Does Not Exist crowd.
Some geneticists, sociologists and bioethicists argue that “black,” “white,” “Asian” and “Hispanic” are antiquated categories that threaten to revive prejudices. Others, however, say that meaningful DNA variations can track racial lines and that ignoring them could deny many benefits of “personalized medicine,” which aims to develop tests and treatments tailored to a person’s genetic makeup. …
Jonathan Kahn, a law professor at Hamline University in St. Paul, Minn., discovered the patent rejections when he began sifting through applications, prompted by a 2008 patent office presentation that raised the race issue.
“Constructions of race as genetic are not only scientifically flawed, they are socially dangerous, opening the door to new forms of discrimination or the misallocation of scarce resources needed to address real health disparities,” Kahn wrote in a report in the journal Nature Biotechnology in May. …
Similarly, in 2009, an examiner rejected a patent for a test for a propensity for prostate cancer because it did not specify the risk the variation posed among different races, Kahn found.
And in 2010, an examiner denied a patent for a test for a genetic marker for asthma and eczema because it was vetted only in whites and Asians.
The prostate cancer and asthma rulings were reversed on appeal. But the colorectal cancer applicant narrowed the application to win approval.
“There’s no telling how many people will just give in and use race in a way that the scientists clearly do not think is an appropriate way to use race,” Kahn said.
Just the fact that patent applications are including such information is disturbing, he and other critics say.
“This gives almost scientific legitimacy to the false categories of race — that somehow being white or being European is a strong category you can use in research,” said Troy Duster, who studies the racial implications of scientific research at New York University.
For decades, demagogues — and even some scientists — argued that racial groups were genetically distinct and, in some ways, biologically inferior or superior, justifying laws barring interracial marriage and other discriminatory practices.
Genetic predispositions — such as for sickle cell anemia, which occurs more frequently among African Americans, and Tay-Sachs disease, which is found more often in descendants of Ashkenazi Jews — clearly can pass down through generations. But as scientists developed modern tools of molecular biology, they produced ever more convincing evidence that genes vary as much among people who identify themselves as the same race as among groups segregated along traditional racial lines.
Except that they don’t. Statistically, genes vary a lot within races, just as they vary a fair amount among siblings within a nuclear family, but they vary even more among individuals across races.
“What we are learning is that ancestry is really the key here,” said Charles N. Rotimi, director of the center for research on genomics and global health at the National Human Genome Research Institute.
Because ancestry and race don’t have much to do with each other, I guess.
“The labels for race, at least as we currently use them, distort some of the things we want to understand in terms of ancestry.”
Then perhaps we need for doctors to use more accurate terms. For example, Professor Kahn is up in arms about a Patent staffer who supposedly treated “Hispanic” as a racial group. This suggests that the medical profession ought to revive more genetically useful terms such as “mestizo” and “mulatto.” Doctors use technical terms for lots of things that are considered inappropriate to mention in polite society, so why shouldn’t they use “mestizo” and “mulatto?” It’s their job, after all.
For example, although sickle cell anemia is more common among African Americans, the blood disorder is also rare in some parts of Africa and common in some predominantly Caucasian populations.
This is the kind of race-does-not-exist talking point that’s more likely to confuse nonspecialist doctors than to help them make more accurate diagnoses. For the purposes of figuring out which tests to run on sick African American children, it doesn’t particularly matter that sickle cell anemia “is rare in some parts of Africa” because traditional African-Americans (i.e., the descendants of American slaves) are a blended population with no ability to accurately tell a doctor something like, “My baby can’t have sickle cell anemia because all 512 of my great-great-great-great-great-great-great-grandparents were from parts of Africa where sickle cell anemia is rare.” The point is that if your baby is African-American, sickle cell anemia should be a concern for your pediatrician. Now, if you and your spouse just got off the plane from, say, the highlands of Ethiopia, well, maybe not, but you are the exception.
Likewise, it would be good for doctors to know that if your baby is, say, 100% Sicilian, then there’s a small chance of sickle cell anemia because there was some falciparum malaria in Sicily.
The ultimate goal of genetic-based personalized medicine is to match care to each patient’s genetic makeup, Rotimi and others say.
“You are truly going to be looking at that individual, whether black, white or Asian. It’s the individual’s genome that becomes important to their disease risk as opposed to their socially identified race or ethnicity,” said Vence L. Bonham Jr., an associate investigator at the institute, which is part of the National Institutes of Health.
But in the mean time … Look, this individualized medical genomics thing hasn’t working out as fast as people thought it would. What is progressing fast is racial genomics. Scientists are getting very good at figuring out people’s racial backgrounds from their DNA.
Injecting race back into the mix carries myriad dangers, critics say. On a practical level, it may result in doctors using tests or treatments on one ethnic group and not another, denying people care based on the color of their skin.
Because less information is better when making diagnoses.
… On a more disturbing level, it could fuel racism.
“It has the social consequence of making it seem that differences among groups are fundamentally biological,” said Barbara A. Koenig, a medical ethicist and anthropologist at the Mayo Clinic in Minnesota. “Inevitably, in our history, that leads back to the idea that one race is better than another.”
But others say that although race is far from perf
ect, some genetic variations with meaningful implications for health can be much more common among certain groups.
For example, the anti-seizure drug Tegretol produces a life-threatening skin rash more frequently among certain Asians than others; the best dose of the common blood thinner Warfarin varies by race and African Americans appear to be at an increased risk for kidney failure because they more often carry certain mutations.
“I don’t think race/ethnicity and personalized medicine are mutually exclusive,” said Neil Risch, a professor of human genetics and epidemiology at the University of California at San Francisco. “You can call it sociological, cultural — whatever. It’s all of the above. That doesn’t mean it’s devoid of genetic meaning.”
In other words, racial medicine doesn’t work in theory, but it does work with human beings. That suggests that we need a better theory.
In fact, recent analyses have indicated that many common diseases probably are caused by genetic variations in different populations, making it crucial to assemble diverse databases, researchers said in an article published online July 13 by the journal Nature.
Two large genetic analyses published July 20 by the journals Nature and Nature Genetics found hundreds of genetic discrepancies between people of African American and European descent. And two papers published online Sunday by Nature Genetics found four unique genetic variations associated with asthma in people in Japan and people of African ancestry. Until scientists learn more about individual genetic predisposition, race provides a useful proxy, some say.
“I think there’s a healthy debate right now about the role of race in medicine,” said Noah A. Rosenberg, a professor of biology at Stanford University.
One of the reasons that this debate has dragged on in a confused fashion for so many years, probably killing a few patients along the way, is that doctors aren’t given a solid concept of race. Doctors are busy, practical people. They need the conceptual heavy lifting to be done by intellectuals, but the intellectual class has overwhelmingly failed when it comes to understanding what race is.
The problem is that because it’s easy to poke holes in the crudest forms of old-fashioned American racial concepts, such as the one-drop rule, that means you can jump all the way to Race Does Not Exist, which is even cruder and stupider. What we need instead is a more sophisticated way for doctors to think about race. Fortunately, I invented* that way back in the 1990s
: a racial group can most profitably be thought of as an extended family that is partly inbred. This is very close to being tautological, and, not surprisingly, lots of recent genetic data supports this insight.
The good news is that doctors shouldn’t have too much trouble grasping my concept because it fits nicely as an extension of a concept they use all the time: the family medical history. The Surgeon General
and the Mayo Clinic
advocate that patients draw up a family medical history for themselves.
Race fits into the notion of a family medical history by allowing your family medical history to be extended beyond relatives whose medical histories you happen to know. Thinking of race as a partly inbred extended family means implies that statistical tendencies should also be garnered from large numbers of members of your more extended families.
The bad news is that almost nobody is explaining this concept to doctors. Thus, we see confused and confusing articles like this one.
* I’m sure lots of other people invented it before me.