You say that sickle cell isn't a racial disease. Are you denying that this and diseases such as Tay-Sachs are genetic in origin or that there are clear racial differences in their rates of occurrence?

Pilar Ossorio

First of all, we need to say that being of a certain race is not what causes somebody to have the gene variant for Tay-Sachs, or the gene variant for sickle cell. It's having ancestors who were in a geographic region where those things either occurred by chance or were selected for, as in the sickle cell case. Although many people in the U.S. think sickle cell is a disease of black people, that's not necessarily true. Sickle cell is found in people in Greece, the island of Orchomenos, in particular, has very high carrier rates for sickle cell. There are also high carrier rates among people on the Arabian peninsula and people in India. There are parts of India where sickle cell carrier rate is as high as it is anywhere in Africa. On the other hand, people in the southern part of Africa - or people whose ancestry goes back to the southern part of Africa - don't have high sickle cell carrier rates because that allele is selected for only in human beings who have lived where there's a high instance of malaria, which you don't find in southern Africa. People do not carry the sickle cell gene variant because they are of a certain race, but because of some more particularized population history.

I also think it's worth pointing out that, while we make claims about the sickle cell carrier rate in black people and white people in the U.S., if you were to go to a period of our history where we defined black and white differently, then those numbers would be different. Or if we were to go to the Bahamas or maybe to Brazil, where currently the perceptions of black and white are different than they are here in the U.S., then the carrier rate numbers would be different. There would probably be a higher carrier rate for sickle cell gene variants in the white population in the Bahamas or Brazil, than there is here. That's because in the U.S. we draw the line so that anybody who looks like they have the slightest bit of African ancestry gets put in the black category. But that's not true everywhere, and it's not even necessarily true at all times in the United States. We can come up with numbers signifying the rate at which a group of people carries a particular gene variant, and those numbers may be accurate and scientifically valid, but we still need to recognize the ways in which the number is arbitrary. These carrier rate numbers will not be true for all times and all places, in part because the way in which we divide up the spectrum of human genetic variation changes; we don't always divide it the same way.

Jonathan Marks

I think it is also a little perverse to define sickle cell anemia as a black disease, when 11 out of 12 African Americans have nothing to do with sickle cell disease. And the other thing, when you talk about Tay-Sachs, bear in mind that Ashkenazi Jews are not in anyone's definition in modern America, a race.


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