Written by KJ Surkan. Professor Surkan is a trans-identified breast cancer survivor with a BRCA1 mutation and a PhD in English. Dr. Surkan is a proud member of Flat and Fabulous and teaches women’s and gender studies at MIT, Temple University, and Swarthmore College.
When I first heard that Lasker award winner and geneticist Mary-Claire King had released a recommendation for population-based screening of women for mutations in BRCA1 or BRCA2 genes, I was ecstatic. King’s discovery of BRCA1 as a gene significant in the prevention of breast cancer has saved my life, and has the potential to save many more through universal testing.
Imagine my surprise, then, to see how much resistance and backlash has arisen in response to the simple suggestion that American women 30 or older be tested for deleterious mutations in BRCA1 and BRCA2, which confer extremely elevated risks of developing breast and ovarian cancers. Apparently America is “not ready” for genetic testing that has the potential to inform the 250,000 to 415,000 women who unknowingly carry this mutation that they are at high risk.
Because, after all, it is much better for women to be protected from bad news than to give them a chance to survive.
I’m stunned, yet I know I should not be surprised. There is a long history of paternalism in doctor-patient relations, rooted in gender dynamics between male physicians and female patients that feminist scholars have traced back at least to the 19th century in the treatment of hysteria and neurasthenia, a condition diagnosed almost exclusively in women. Dr. Weir Mitchell, famous for treating female hysterics with a form of torture known as the “rest cure,” wrote in Doctor and Patient in 1901:
“Wise women choose their doctors and trust them. The wisest ask the fewest questions. The terrible patients are nervous women with long memories, who question much where answers are difficult, and who put together one’s answers from time to time and torment themselves and the physician with the apparent inconsistencies they detect.”
How is it possible that over a hundred years later, women are still thought to be incapable of making valid decisions about their own health? Among the worries expressed about universal BRCA genetic testing are that it will lead to widespread and unnecessary mastectomies, that those testing negative will falsely assume they can’t get breast cancer, that the cost will be prohibitive, and that it will overwhelm genetic counselors and the current healthcare system.
It is unbelievably paternalistic to assume that women as a population are so weak-minded that they will unthinkingly rush to surgery. Women do not take the decision to have prophylactic surgery lightly. This is gatekeeping at its worst. Even if those who test positive do opt for surgery (not all do), isn’t that their right? Why are we freaking out over allowing people to know their genetic status? And how would we ever get more reliable data about which variants confer the most risk if we do not test and track more people in longitudinal studies?
This is about patient access to information. Genetic testing for BRCA mutations is basic harm reduction. To restrict access is to knowingly sacrifice women to breast cancer, particularly in families in which mutations are inherited through paternal carriers. My family is one of those, a non-Jewish family in which the mutation was passed through my father’s side with no history of breast cancer, only to slam the next generation with breast cancer in all the female carriers with absolutely no warning. We had no idea that we were programmed to get breast cancer.
If my family had access to testing earlier, perhaps my sister would not have become the canary in the coal mine in her early 30s. Only because of her cancer was I tested, and only because I tested positive for BRCA1 did I begin MRI surveillance, which detected my invasive breast cancer at the earliest stage possible. I have King to thank for my ability to avoid chemotherapy and radiation, if not early death.
The cost of genetic testing is dropping fast; the cost of cancer treatment is rising. Earlier knowledge would mean having more choices, and less costly ones, overall. With computer processing speeds getting faster and faster, the price of testing will inevitably continue to decrease. But every day we delay is another day of inaction by BRCA mutation carriers who have absolutely no idea they are walking time bombs. At a minimum these people need heightened surveillance. At what price point does it no longer become reasonable to throw BRCA positive women under the bus in the name of cost savings?
And what of the claim that women won’t understand the meaning of the test, that those who test negative will stop getting mammograms and preventative screening? Gatekeeping is not the solution. Rather, let’s focus on getting genetic counseling to scale to more patients. We can build education tools into the testing process for patients to make informed decisions. And the future is already here. Today we are already living in a different medical world, and it sells everyone short to think that we can’t wrap our minds around new technology. Genetic literacy will improve just as computer literacy improved back in the eighties and nineties.
Finally, please stop confusing universal testing with mandatory testing. Dr. King didn’t write her perspective expecting that we were all going to test every woman for BRCA tomorrow. In fact, universal screening generally is not mandatory. By calling for universal screening, we are saying that any woman over 30 who wants genetic testing for mutations leading to heightened risk for breast cancer should have that available to her. We have universal prenatal testing for PKU though only a small number will test positive, because it is a condition for which something can be done. And something can be done for those testing BRCA positive as well; with knowledge comes the possibility of prevention, the ability to avert the tragedy of suffering and untimely death that has struck so many of these families.
The “not ready yet” rhetoric has been deployed over and over again in reference to women and technology, and in response to women’s demand for equality in general: at various points in history women have been not ready to drive, not ready to vote, not ready to work, not ready to compete in athletics – yet ultimately they have done all of these things, and done them well. What are we waiting for, exactly? It’s time to give women access to testing – and to let people make their own personal choices. Let’s get to work on pilot studies, and fix the underlying problems with our medical system in order to make Dr. King’s recommendation a reality.
This post is dedicated to the memory of Barbie Ritzco, who also did not know of her BRCA status prior to diagnosis with breast cancer. She passed away on Friday September 26th, 2014.