Sunday, November 23, 2014

Dorothy Roberts: Fatal Invention

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If you've been to liberal arts school, you've read Dorothy Roberts' Killing the Black Body. The story of reproductive rights is often told as the story of abortion rights as they relate to white women, and Roberts changed the picture in 1997, for those who would listen. Fatal Invention is a complicated book with a complex argument, and I'm not going to do it justice, but I'll try.

 Essentially, we know that race is socially constructed. There is no such thing as a "black" person or a "brown" person or a "white person"- there are only people and distinctions fall where society tells us they fall. The definitions of "blackness" and "whiteness" have changed over time, and for various political reasons- the famous 1 drop rule is an obvious example. Who is white has changed in America (and obviously, in other places)- Jews and Irish immigrants were not always white, though now they're considered religious or ethnic minorities, not distinct races. One would think that advances in genetic science would help put this discussion to bed for all time: people are people, genetically indistinguishable- it wouldn't even make sense to attempt to distinguish people by race when talking about genetics since we've already established why race is socially constructed. Further, it wouldn't make sense to try to prove racial difference on a genetic/scientific level. However, Roberts shows that the opposite is happening: as our understanding of science improves, the level of effort going into thought about race on a scientific level is increasing, not decreasing, and is further entrenching the thoughts of racial difference as truth, rather than construction.

At first glance, it's easy for us leftists to think, oh, I would never do that! Those must be conservatives trying to pull that kind of shenanigans. But one of the most awesome things about Roberts is that she's not about to let anyone off the hook. Just like Killing the Black Body took the reproductive rights movement to task, Fatal Invention reminds us that liberals are in on this, whether we like it or not. This is not (again, this is a complicated book with a lot of paradoxical arguments) an easy subject. For example, some of the racial divisions in scientific studies come from well-meaning places. Historically, the vast majority of scientific studies used white men as the clinical subjects. In the 1980s, critics asked for a shift to be more inclusive. This sounds good, right? We don't want all science-y stuff to only take into account the perceived majority. Beginning in 1986, racial categories were institutionalized for reporting purposes- in order to receive federal funding, trials had to include minorities as subjects and had to analyze findings by race. In theory, this could have been awesome. It could have been a way to analyze systemic issues facing minorities, women or children. Instead, the generalized response has been to look at biological/intrinsic reasons that different racial groups respond in the studies. "The legislation's emphasis on potential racial differences fosters the racism that its creators want to abrogate by establishing government sponsored research on the basis of belief that there are significant biological differences among the races," says Otis Brawley of the American Cancer Society. Biological definitions of race are thus reinforced in studies by these practices designed to eliminate racial disparity- this can only be done by looking at social inequality. Whoops. In fact, racial categories are now so entrenched in scientific research that they're used as a reason (read: excuse) for the research itself. Only, a 2006 study found that the race-based independent variable is specious: "The research team found that 72 percent of the studies failed to explain their methods for assigning race to research subjects. Despite this glaring flaw, 67 percent of the same studies drew conclusions associating genetics, health outcomes, and race."

It isn't just science that is helping to re-entrench the ideal of biological races. Science is a particularly tricky one, because, well, it's science, but also because liberals pride themselves on turning to science where more conservative factions might turn to history or feelings or religion. When science leads us astray, we're in big trouble (not that science hasn't made mistakes in the past...) But big business also has a lot invested in this new (old) racial science. Roberts tells the story of BiDil, a prescription drug for African Americans with heart disease. BiDil was developed as a drug for everyone, but didn't meet the FDA muster, so the developers went back and saw that the drug seemed to do well with African Americans due to those mandated racial reporting numbers listed above. They repitched the same drug and got it to the market as a drug specifically for black people. There is, of course, no such thing as a drug that works specifically for black people. Heart disease is heart disease. What's driving this is a move towards "personalized medicine": the idea that once we know our genes (think the breast cancer gene), we can know what medical decisions we might want to make, even before we have a particular health problem. The makers of BiDil pushed hard with all kinds of black physicians and medical groups and worked hard to make this the first success of personalized (racial) medicine. It didn't work, for a variety of reasons- it wasn't available in the generic so medicare wouldn't cover it, it required more pills per day than the standard treatment, etc. The main reason, Roberts finds, that it didn't get a lot of support was that the very people who were supposed to jump all over a pill just for them were totally suspicious (and, it turns out, rightly so.) Black people remember what "black medicine" meant and still means: subpar care with subpar facilities, shady and illegal studies like the Tuskegee trials and other nepharious examples. Why would they want a special black pill? "I'm fine with whatever the white people are taking" is a recurring theme among people offered BiDil. And it turns out, their gut was right: BiDil was being sold at a higher dose for African Americans than the FDA recommended for anyone else, because of those racial reporting requirements and because of the rush to put it on the market. The amounts being sold weren't necessarily the safest for "white" people or "Asian" people, but were the safest for "black" people.

 The recent interest in getting personalized genetic information also has racial implications. I have only heard of 23andMe, but apparently there are dozens of these things, including ones specifically being marketed toward black people. With these "spit kits," you pay some money, spit in a tube, and learn about your genes. You also learn about your race, or, in the more sneaky versions, your ancestral location: which of the four or five main areas did your ancestors come from- Asia, Sub-Saharan Africa, Native North America or Europe? Essentially, what race are you? It's important to remember here that race is socially constructed. What we call a "race" is GENERALLY aligned with these areas but does not have any stability over these lines- what people in the US might call one race differs from what one in Mexico or China might call another race, further proving the social construct of race. It's also important to remember that the boundaries of racial demarcations are constantly shifting over time. The idea of a spit kit telling you you're from Europe is a euphemism for saying that you are white- that somewhere, at sometime, there was a pure European- or a pure "white" person. For you to be 10% European means that someone was 100% European. It also means that someone else is 100% anything-else: people can be differentiated biologically by race.

Some kits are being marketed specifically toward black people, who often have no solid way of tracing their ancestry further back than slave ships. Using markers, the kits might tell someone their ancestors are from a tribe in Sierra Leone. This has been greeted with great fanfare among some in the African American community. But Roberts reminds us that this ancestral marking is only ONE ancestor among, at that level of background, at least 32 ancestors- it is not evidence that the individual is uniquely from said tribe in Sierra Leone anymore than the fact that my grandmother was born in St Louis is evidence that I am originally from St Louis. Further, she reminds us that tribal demarcations and borders of countries as we know them now are ahistorical and products of colonialism: to be proud of heritage from Sierra Leone is nice, if it gives you something, but it is also based on a false version of history.

I know this is a lot to take in, and if you're like me, you're probably wondering, well, wait- we ARE from somewhere, right? Or, maybe in the back of your mind, you're saying, well, aren't certain kinds of people more prone to certain diseases than others? What about Jews and Tay Sachs? (That's the one I kept thinking of- I don't know anything about genes, but I'm Jewish, and have been told as long as I can remember that Jews have to be screened for Tay Sachs because it's something we carry. Sounds like biological race, right?) For one thing, Tay Sachs is located on one gene- it's been located and identified, unlike most diseases which are not easily identified, partly because they're spread across multiple. For another, it is rare: it is very highly concentrated in an ethnic group (though it is not exclusive to Jews). Roberts writes, "genetic mutations are not grouped by race. Race-based testing reinforces the myth that races are genetically distinct from one another and that our genetic risks are determined by our race." The BRCA1/2 mutation (breast cancer) is commonly thought to have a higher incidence among women with Ashkenazi Jewish heritage. But there is a gap in who gets the genetic testing: the test costs $3000, and white women are almost 5 times as likely to undergo counseling. As Roberts explains, "it is just as useful clinically for black at-risk women to be tested as white at-risk women." Until that happens, our common perception that the BRCA1/2 mutation is exclusive to Jews is dangerous, as is the reverse of the tautology: that the incidence of BRCA1/2 in Jews proves the biological construction of race.

This stuff is all troublesome. But the outcomes are more troublesome. When we start looking for genetic answers to racial disparities, we let ourselves off the hook for the real causes the differences: systemic issues. Roberts uses the example of the hugely genetically different group of African Americans (Africa is a giant continent, remember?). It would be pretty strange for such a genetically diverse group to inherit "so many bad things." More likely, "given the persistence of unequal health outcomes along the social matrix of race, is that they are caused by social factors."We live in a troubling time that is hard to make sense of- genetic differences help us cope with some terrible statistics Robert throws at us. For example, "There are more blacks under correctional control today than there were slaves in 1860." It's easier to find some gene, like the "warrior gene" to explain this than to look at the money involved in the prison system or the lack of money involved in the school system. It's easier to think in the back of our minds that "'they' were born that way" than to think that we need to take a hard look at the environmental, social and judicial injustices we practice that keep socially constructed racial groups in such low places. We are all people, we are all the same. We have to make that a reality.

Thursday, November 06, 2014

Introducing Catfish

Rollie loves dogs. He adores them- starts prancing around and making all this noise and picking up toys and throwing them and you get it. He is happiest when another dog is around. I've never wanted two dogs- I was fine with Mac not liking other dogs; a perfect reason to only have one dog. I've had Rollie for over two years now, and it's been clear that he wants another dog. I've fostered a couple and he's so happy when they're here. The only thing is that he doesn't like the change that happens- the baby gates I put up and xpens- I usually have puppies that can't have free rein of the house. Rollie's vision is poor and it seems like he can't quite see the gates- they're like invisible walls.

So, I've been idly thinking about getting another dog- an older, mellower dog. I met a lovely dog, allegedly 10- possibly younger, last weekend, and thought, well, I could do this. Then I went to the shelter Sunday afternoon to go meet another dog, allegedly 10. The picture on the website was terrible- just a black blob. Well, the dog didn't look 10. The boyfriend and I actually laughed when we saw her. She was decrepit- looks closer to 14, no teeth, arthritic, has spondlyosis, curved over, spine fused, very little control of her back end. It just seemed very silly to have her in the shelter. She met Rollie and tolerated him, which is saying something, because he's rude. He plays like a puppy, and loudly.

So I went home and thought about it. And then I realized I was still thinking about it. I decided to bring the dog (formerly Gracie) home, and give her whatever time she had left at my house. Somehow I forgot how pathetic she really was. I gave her a bath and she looks better now, but she looks... really bad. The dogs are having fun- attempting to play and then falling over, then napping on the bed and then switching beds, etc. She's tiny- supposed to be maybe 40 pounds, but is so underweight that she's 32lbs now. She makes Rollie, at 42lbs, look HUGE. And young and spry.

 She jumped right in the car (or tried before I could stop her- her back end isn't strong enough to get in by herself). She has tried about 5 times to sneak on the couch, and she's fast enough to do it when my back is turned. She runs right into the crate- even put herself there after I gave her a bath. Poor dog was stinky and dirty and has another one in her near future.