Fatal INTERPRETATION Part IV

Fatal Interpretation Part IV: The New Biopolitics of Race and Conclusion

We have come so far in the book Fatal Invention by Dorothy Roberts that we are getting to the end—I promise. We are now at Chapter 11, “Genetic Surveillance.” Did you know the government is going to want your genetic fingerprints or does that sound a bit paranoid? Ask Dorothy Roberts who goes from violent felons to sex offenders to getting a traffic ticket. Yes, some of that is worrisome, but DNA can also be helpful. It certainly is in paternity tests on Jerry Springer’s show. Again, we are talking about policy issues, not whether race is a social construct. Unfortunately, we can’t have it both ways; use our DNA freely and totally protect our DNA.

Uh oh. Roberts says DNA is not infallible. She states, “The genetic material in government databanks has to be retrieved, transferred, transported, identified, labeled, analyzed, and stored by human hands, and there is opportunity at every stage.” I think of DNA as closely related to fingerprints and nothing horrible has happened with those. I’m not sure yet what point Roberts is trying to make. Are DNA samples better than race or what? She attacks law enforcement for being racially biased, but that’s because racism exists. Once again, another old problem with no answers or even suggestions from the author, and once again I see it as policy issues.

The last chapter is “Biological Race in a ‘Postracial’ America.” I think—finally—Roberts and I agree that the United States is not postracial at all. With arguments she makes from conservative color blindness to liberal views, she gets bogged down in her own perspective by writing things like “When racial justice advocates refer to the political meaning of race, however, it is interpreted as an expression of racism orally equivalent to forms of overt white supremacy.” Really? Or maybe we just hang out with different advocates. It takes an entire chapter to say racism is alive and thriving and to think otherwise is just ignorant, but we can’t make race go away no matter what we call it.

Roberts tries to show us ignorant people that government is evil, privatization isn’t the answer, and then she goes into a rant about the prison system, all really to no avail. She does not suggest any ways to make the system different. Anyone can complain; few do anything about it.

FINALLY, the last part of this book on page 309 is “Conclusion: The Crossroads.” Wow. Now I get it completely! Roberts contends she has proven that race is not a biological construct, and it’s not a social construct, it’s a political construct and she lights up the world with this thought. First, it’s nothing new, and has been suggested by many over the years. Second, she hasn’t proven anything. The book is disjointed and is mostly just quotes from other academics (the endnotes of quotation sources is over 50 pages long) with the author trying to tie things together while pandering to her own personal political agenda. The things she decrees…well…you just have to read them for yourselves.

My intuition and over 20 years of advocacy lead me to believe that I don’t know if there is any biological basis for race. Just when I think we really are all the same, something comes up like these:

·        Bone marrow matching is closest with someone of the same race, ethnicity, or whatever you want to call it. So, how can biology not matter?

·        The incidence of high blood pressure is higher in blacks than in any other race. So, how can biology not matter?

·        Deaths from breast cancer are highest in black women. So, how can biology not matter?

·        Asian lung cancer patients have different medical responses to tyrosine kinase inhibitors than white patients. So, how can biology not matter?

·        Diabetes is less prevalent in whites than blacks. So, how can biology not matter?

·        If you are African-American, your eGFR on lab work must be calculated differently because of a difference in muscle mass. So, how can biology not matter?

·        Asthma and bronchodilator drugs response has been shown to vary widely among racial and ethnic groups. So, how can biology not matter?

Roberts doesn’t even mention these things in her book because they don’t fit into her agenda. The danger is that some people believe what Roberts has implied, for example that there is no reason for racially/genetically bone marrow donors for multiracial people. She has not said that, but is guilty by implication and omission and has caused more people than she knows to state that “Dorothy Roberts has found that multiracial people do not have to enlarge the bone marrow donor pool.” It’s just not true. Please read this book carefully and do your own research into what other top medical specialists, think. Look at the clinical studies and research.

The truth is closer to this: we do not know with absolute certainty if race has any biological basis. It really doesn’t matter what kind of construct race is or what we call it, it’s still here, it’s still a problem, and no one knows how to fix it. Roberts rehashing of old problems is not going to help. She is a civil rights professor, and she could really be useful in helping with answers to things like why we’ve been told that multiracial people have no legal standing because they are not a protected group under the law. She would know what to tell the multiracial engineer who was hired as black and fired as white.

I think Dorothy Roberts set out to write an academic tome attacking the pharmaceutical industry, specifically BiDil. However, she never does reveal the other side of the story, and she succeeded best in that. The bigger problem is that certain people began misinterpreting the book, raving that this book solves all the racial problems and must be read because the author proves—finally!—that race does not exist or if it does, it’s not biological at all. The problem is bigger because if we drop “race” out of things like clinical trials and medical testing, people could be hurt and possibly even die.

Race has bred racism; I think we can all agree on that. Rather than spending time on what word(s) to change “race” to, such as “political construct,” can’t we work on educating policy makers? It’s going to take academics like Roberts and advocates like me and the members of Project RACE to make certain that those who make the policies know and understand what’s at stake and how people are similar and different. Isn’t that what diversity is about? We have tackled important issues with policymakers like the need for self-identification, for multiracial people to have a choice, and that no one should be invisible in the healthcare system of this country.

That 0.1 percent difference is actually huge. I think race-based medicine is definitely a dilemma and certainly one I can’t solve, neither can Roberts. Truly personalized medicine could happen with the help of The Human Genome and DNA; wouldn’t it be a tragedy if we never get there because we stop potential medical progress because we are afraid of what we might find out along the way? It could indeed be a fatal invention.

Fatal Interpretation Part III: The New Racial Technology

Fatal Interpretation Part III: The New Racial Technology

Now comes Chapter 7, “Pharmacoethnicity,” and now we’re getting somewhere in territory I am quite familiar with, the Human Genome Project, DNA, and pharmacoeconomics. In a rant titled “The Unfulfilled Promise,” Dorothy Roberts states “Today, most drugs are developed for the whole population based on a ‘one size fits all approach. But there is a wide variation in the safety and efficacy of drugs among the individuals who take them.” Yes! I’m with her!

But then we’re back to her distain for race-based pharmaceuticals. I’m not going to bother quoting Roberts when you can read the book for yourselves, but I have often wondered why I am given the same dosage of an antibiotic as a black male twice my size or an Asian teenager. A passage in the book about whether or not the likelihood of certain diseases occurs in multiracial people is ridiculous because we just don’t know.  

The fact remains are that there have been many diseases that have shown prevalence in one race, including sickle cell anemia, Tay Sachs Disease, asthma, high blood pressure, and skin cancer. We are not on the brink of truly personalized medicine if people like Dorothy Roberts continue to shun any race/medicine connection. We really don’t know if this thing called “race” contributes to health risks in certain populations or not. This debate has gone on for literally hundreds of years.

I fondly remember sitting with F. James Davis, author of Who is Black? for hours when he came to visit me. That was in the early 90s, and we were batting the same arguments back and forth! It was mutually enjoyable, not divisive.

Chapter 8 “Color-Coded Pills” is where the rubber meets the road. Enter BiDil, that first race-specific drug. Roberts slams BiDil in every way she can, but she can’t truly dismiss it. BiDil is prescribed for blacks with heart failure. It is very common for a drug to be repackaged as benefitting something else when its patent is about to expire, which is what happened with BiDil. The FDA approved it. It’s actually the combination of two drugs. I don’t think the specific clinical trials were handled correctly for BiDil, and a longer study with more races and ethnicities should have been done. That does not mean that BiDil should be shelved. It means more investigation is needed.

News Flash: The pharmaceutical companies are in business to make money. They repackage and reintroduce new uses for drugs every day. Although a drug patent usually lasts for 20 years, by the time it hits the market after clinical trials, it can actually be only 8 to 12 years before the exclusivity is lost and generics can be made at a much lower cost. In other words, once the patent expires, other companies can produce the drug, introducing competition and lowering the price of the drug.

If the original drug company can join the same drug with another drug or find a new usage for the same drug, it’s a win for them; it means a new patent and more profit, which is exactly what happened with BiDil. The economics of pharmaceuticals is fascinating. Another example is antibiotics. We have been told over and over to stop demanding antibiotics from our doctors because people are becoming immune to them and soon they won’t work at all. The obvious question is why don’t the pharmaceutical companies develop new antibiotics? Because they are not money makers. Antibiotics are dosed short-term, a week to ten days usually. The big pharmas can make much more profit from making long-term drugs for chronic ailments. Money is what this is really about, not race.

There is nothing new there, yet Roberts states, “As should now be clear, there is no scientific proof that BiDil works differently in black people.” No, Ms. Roberts, it’s not clear at all. BiDil might save lives of African Americans. We just don’t know for sure. Meanwhile, Roberts states that insurance companies refused to cover the cost of what was now two generic drugs, but put together, which is possible. Yet if my doctor tells me that one brand drug has replaced two generics and that particular drug is not covered on the formulary for my health insurance, it’s up to me to decide if I wish to pay out of pocket for it.

Roberts also goes into only a few other drugs that fight certain diseases found to help certain races. It’s not a very inclusive list. Roberts also states that pharmaceuticals will not eliminate the social conditions and barriers to medical care that create health inequities in the first place. Wow, I didn’t realize pharmaceuticals were supposed to do that.

It simply is better to have demographic subsets for a lot of things in a clinical trial, depending on the drug being tested. If no racial differences appear, great! But what if race is not looked at and it turns out Asians, for example, do react to that drug differently?

Roberts gets to Chapter 9, “Race and the New Biocitizen.” Stay with me. Yes, there are companies that offer to analyze your whole genome sequence and those that offer a portion of your DNA to be tested. At this point in time, I agree that it’s not 100 percent accurate—it’s too soon—and many companies are getting into it for the money. Also, the health world is more comfortable with genetics than with “race.” I like Roberts explanation of mutations of the BRC1 and BRC2 genes associated with higher risks of breast and ovarian cancer because—she didn’t plan it—but  she gives perfect examples of exactly why multiracial women need to be proactive in this area.

This author completely loses me in her discussion about genetic testing for pregnant women. She goes into her personal story, which took place in 2000 when she was pregnant with her fourth child at age 44. Having amniocentesis usually is recommended if the mother is over the age of 35. She doesn’t say she actually had amnio, but lets us know she participated in a clinical trial investigating the potential for a blood test and ultrasound to detect in the first trimester of pregnancy because of the risk of Down syndrome and other chromosomal defects. So she apparently goes through all of this so she can get a free ultrasound and complains that no one explained to her why she was getting genetic testing in the first place. What?! And she didn’t ask? Why wasn’t she proactive for her unborn child? We really are very different people.

I was over 35 when I was pregnant with my second child. I chose to have CVS (chorionic villus sampling) done after thoroughly investigating what was known about it then. The genetics specialist explained in total detail what he was going to do and why. We even joked about the baby having the first case of Sickle Sachs (Sickle Cell and Tay- Sachs) because of the black/Jewish combination. Bad joke, I know.

After the testing, my insurance company refused to pay because they said it was “experimental.” No, I was not buying that. I pulled out all my research, showed them why it was no longer experimental and that amniocentesis would have cost them more and I would have had to wait much longer to have it done. They paid for the test entirely.   

Chapter 10 is “Tracing Racial Roots.” The chapter is devoted to showing how flawed racial science is going to do us all in. After all, she tells us that although biracial, she “formed my own moral allegiance to black people based on a sense of common struggle against racial oppression.” Too much personal information. Oh wait, in the same paragraph, she also alludes to people getting benefit from “mixed ancestry.”

Then comes the history lesson of how everyone comes from African ancestry anyway. More personal examples and I’m not sure why this is even necessary or in the book at all. She uses all the right words from the anthropology gurus, but you can read it for yourself. I am not even going to comment on the crazy statements in the Am I Jewish? and Authenticating Native American Blood sections. In Consumer Beware!  Roberts warns us not to fall for DNA test kits being sold. That makes sense and I agree at this point in time.

Dorothy Roberts shows in Making Racial Claims that blacks know how to play the game of getting race-based scholarships and entitlement to affirmative action. At least I think that’s what she’s trying to say, but then this: “Whites defined enslaved Africans as a biological race. Blacks in America have historically resisted this racial ideology by defining themselves as a political group.” Really? A political group? Then she brings up her own multiracial heritage again and reminds us, “But as a young girl, I chose a heritage rooted in the struggle of black people around the world to defeat racism and demand treatment as equal human beings.” Why does Dorothy Roberts spend so much time and effort deconstructing race only to choose one? Why does she get to pick something that is not biological? Why multiracial people who want to embrace their entire heritage are touting this book as “life-changing” is just beyond me. Look for the final review in Part IV next week.

Fatal Interpretation Part II

Fatal Interpretation Part II: The New Racial Science

In Chapter 3, of Fatal Invention “Redefining Race in Genetic Terms,” author Dorothy Roberts begins with a contentious, secret meeting in Maryland regarding the Human Genome. She almost makes the case for “some” researchers seeing race as a statistical grouping based on genetic similarity, which is basically what the census bureau has done. Then she heads toward ancestry. She agrees that people are born with ancestry that comes from their parents but are assigned a race. I agree with that too; however, she seems to do an about-face and writes, “If there are no pure races, we should not conceive of people with mixed ancestry as being a combination of two or more pure races.”

Wait one minute. Now she is delving into the “pure” and “mixed” revelation that some of us warned about 20 years ago. I think Roberts gives much too much credence to racial purity. She is really all over the place. Is race a construct of some kind? Does race exist? Is purity the way to judge multiracial people? Whatever she is trying to get across, she certainly takes many detours along the way.  

Roberts gives credence to her ilk by stating “It appears to be a common belief that genomic and biomedical researchers should be left alone to investigate race objectively at the molecular level, while sociologists and their ilk should stick to understanding how race functions in society.” I don’t think this is a common belief at all, and I understand what she’s saying, but considering she is not a biomedical researcher, what’s her basis for this book?

Then she’s back to geography, writing that “geographic ancestry does not solve the problem of race.”  So, what solves it? Your guess is as good as mine at this point. In one paragraph she states, “Race must be a political category.” Really? More back and forth. This author is starting to bug me. We should believe this just because she says it?

I don’t blame multiracial people—or monoracial people—for wanting to believe no biological differences exist between races. I want to believe it! But it’s still just a premise, a possibility. I have no idea if it’s true or not, but for Roberts to get the multiracial community to buy into such a premise, seems like something we want her to confirm instead of something we truly think about, research on our own, and don’t blindly believe people promoting this or any one book. Please, people, think for yourselves, do your own research and stay open about this issue.

Chapter 4 is titled “Medical Stereotyping.” This is where Dorothy Roberts and I part company. She goes all the way back to Tuskegee, which was a totally unfortunate tragedy. Roberts then jumps to Jewish people and Tay-Sachs disease, then Chinese and Mexican immigrants. She calls some diseases “concocted.”

On the way to I’m not sure where, Roberts places blame on doctors and medical schools for even suggesting that there may be the tiniest difference in diagnosing anything if you take race into account. I have talked to hundreds of physicians and they aren’t sure what to think, but they know that something makes patients react differently to things like prescription drugs and anesthesia.

Aha, there it is on page 98! She barely introduces us to Cardiologist Jay Cohn, who invented BiDil, touted as the first race-based drug. Then just as quick, Roberts stops that story and oddly goes into cystic fibrosis and how ONE black child had the disease that overwhelmingly afflicts white people and therefore there is no cause for race-based medicine. Not so fast Ms. Roberts.

Chapter 5 is titled “The Allure of Race in Biomedical Research” and deals mostly with clinical research. She goes into OMB Directive 15 for federal reporting of race and ethnicity, which everyone in this field should certainly know about by now. It feels like filler material to me.

Roberts tries to debunk high allergic asthma prevalence in Puerto Rican and African American children, sickle cell disease in blacks, and other health disparities. Then she makes the statement that “Black poor people experience a more intense poverty than white poor people.” Does that mean race exists on some level? Does she not see the intense poverty that people of all races suffer?

Chapter 6, “Embodying Race,” is pretty unimpressive until a one-liner stopped me, “Racism doesn’t affect just those who experience it—it also affects their children while still in the womb.”  Wow, minority women have stress in childbearing that results in stress on their unborn children. I can tell you as a white woman, we all have stress in childbearing!  Then she jumps on Directive 15 again. Nothing is really accomplished there, so we jump into policy. Now Roberts and I are getting a bit closer, but Roberts gives it a short two and a half pages and it’s done.

Has Roberts really shown us the new racial science in this section? No, but just wait for part III!