HBOC is a Social Justice Issue

The NYT had an excellent article last month about African American women and breast cancer. It’s full of choice quotes, so here are a few:

  • “Over all, black women with a breast cancer diagnosis will die three years sooner than their white counterparts. While nearly 70 percent of white women live at least five years after diagnosis, only 56 percent of black women do. And some research suggests that institutions providing mammograms mainly to black patients miss as many as half of breast cancers compared with the expected detection rates at academic hospitals.”
  • “Researchers from the Sinai Institute last year analyzed breast cancer cases in the country’s 25 largest cities and found that African-American women with breast cancer were, on average, 40 percent more likely to die of their disease than white women.”
  • “Doctors and health care researchers say the reasons behind the black-white cancer divide are complex. Economic disparities that disproportionately affect African-Americans explain some of it. Years of racial discrimination and distrust of the medical establishment dating back to the Tuskegee, Ala., syphilis experiments on black men in the 1930s continue to influence health decisions made by African-American families in the South.Lack of health insurance among low-income and self-employed women was also cited as an obstacle to timely care, a problem that may be eased if some of them gain insurance through the Affordable Care Act.”
  • “I had to get cancer to get health insurance,” Ms. Singleton said, a tear rolling down her cheek. “I’ve been one of those people waiting for Obamacare, waiting for health insurance. And this is how I finally get it.”

In other words, breast cancer is a social justice issue insofar as race and ethnicity influence women’s experiences of it in inequitable ways. Although the article doesn’t really touch on genetic issues, BRCA mutations too are racially inflected: it’s well documented that some ethnic groups, particularly people of Jewish descent, are more likely than the general population to carry a deleterious mutation.

While there’s been a lot of research on Jewish women with mutations, there’s been much less on African American women with mutations. A few months ago, I wrote a post about race and BRCA1/2 that focused on black women. The post was based on an article that turned out to be filled with false information. I took it down so as not to spread more misinformation about HBOC. Still, the racial dimensions of BRCA mutations are something I’d like to know more about, but which I haven’t found much good information about. I’ll keep looking.

One source that comes to mind, however, is Joanna Rudnick’s documentary film In The Family, which tackles the question of race and BRCA mutations in African American and Latina families. She interviews a group of African American women in Chicago, one of whom explains that black women do not seek out genetic testing because they don’t go looking for trouble–presumably they have enough already.

A recent study “found that the Hispanic women had a higher prevalence of the harmful BRCA1 mutation than white women, and the highest prevalence was among young African-American women.” Other findings:

The researchers found that Ashkenazi Jewish women with breast cancer had the highest rate of the BRCA1 mutation, at 8.3 percent.

For Hispanic women with breast cancer, the rate was 3.5 percent. Among non-Hispanic Caucasians, the rate was 2.2 percent, and among Asian women it was 0.5 percent.

For all African-American women, the rate of the mutation was 1.3 percent, but for those under 35 who had breast cancer, the rate was 16.7 percent, Dr. John’s group found.

This may be obvious, but it’s also worth saying that every woman experiences her BRCA+ body differently and that these experiences are heavily mediated by race and socio-economic factors. BRCA+ women come from many backgrounds, yet the HBOC community is predominantly white. I’m not entirely certain why this is, although I have some theories that I’m mulling over. Nonetheless, white BRCA+ women–myself included–need to help construct spaces that welcome women from many different backgrounds, not only in terms of race, but also class, sexuality, etc.