In May 2013, Angelina Jolie shocked the public with her New York Times op-ed disclosing her decision to have a preventive double-mastectomy. She made the choice after receiving genetic test results that indicated she carries a mutation on her BRCA1 gene that significantly increases the risk of some types of breast or ovarian cancer.1 Her candor about this important medical decision sparked a flurry of interest from the media, health care professionals, and — perhaps most importantly — other women.
Jolie’s experience has heightened awareness about this type of breast cancer prevention, as well as the potential of genetic testing. Nevertheless, her promotion of genetic testing is problematic because most women, no matter how hard we might wish it, are not Angelina Jolie! Her op-ed only touched on the economic, emotional, and racial barriers that many women face in the quest for genetic testing and treatments, and health care access in general.
The economic barriers women face in attempting to access genetic technology provide a powerful lenses through which to examine the shortfalls of the American health care system. A little scientific summary of the technology in discussion: The test Jolie received works by screening for mutations in an individual’s BRCA1 and BRCA2 genes. Finding a mutation on either of these genes indicates an increased risk of breast and ovarian cancers – the risk is even higher if a woman has both the mutated genes and a family history of these cancers.
Myriad Genetics held the patent for the specific BRCA1 and BRCA2 genes until June 2013, when the U.S. Supreme Court ruled that isolated human genes cannot be patented. While it held the patent, Myriad was able to charge as much as $3,000 for the test, which was typically not covered by insurance, putting it largely out of reach for most women. (For me personally, that’s two month’s worth of pay…and I have two jobs!)
In the near future, however, it is hoped that the Supreme Court ruling and Affordable Care Act (ACA) implementation will help expand the availability of genetic testing and research, and reduce the costs of genetic technologies. (Under the ACA, if a health care provider determines the BRCA test is appropriate for a patient, her insurer must cover both it and genetic counseling with no copay.i)
Women of color face additional barriers. Given the contentious, oppressive, and often violent interactions between women of color and the health care system, women of color have historically been distrustful of the U.S. medical establishment. It should come as no surprise, then, that a small study published in 2013 found that African American women who have higher levels of distrust about the medical system were less likely to seek genetic testing for BRCA1 and BRCA2.ii
These study results are incredibly alarming, as “distinct variations in the BRCA1/2 genes have been reported among African American women,” which need to be further explored.iii Worse, African American women have higher death rates from breast cancer than any other racial/ethnic group.iv Even if these women have the economic resources to access new genetic medical technologies, centuries of racism, mistreatment, and abuse by the health care system may deter African American women and other people of color from seeking the tests and preventive care necessary to make the best possible decisions for their health.
Racial and economic inequalities are enshrined in our health care system due to increasing privatization, skyrocketing costs, barriers to access, and historical abuse by doctors and other providers. As expensive genetic health care technologies gain popularity, however, there is a risk that economic and racial stratification may become embedded not only in our health care system, but also in our very genetic code. If the upper-class continues to take advantage of pricey new genetic technologies while the lower classes are denied access to this high-tech health care, in a few generations we could literally have genetically divided classes. The upper-class would have exponentially lower rates of health problems caused by inherited genes, while the rest of us lowly peons who can’t afford these tests and procedures will continue to experience higher rates of health problems.
This may sound like a dystopian work of science fiction, but it’s not entirely implausible — thanks to a procedure called “preimplantation genetic diagnosis” (PGD). Although many of us know more about genetic testing thanks to Jolie’s Op-Ed, many people don’t know about PGD, probably because most of us cannot even dream of affording or accessing it. PGD gives parents the ability to test embryos in vitro for genetic markers before implantation; it can even be used to test oocytes before fertilization! The markers looked for could be for simple things, like the sex of the child, cosmetic attributes, like eye color; or inherited diseases (or dispositions to disease), like certain types of breast and ovarian cancers, sickle cell anemia, or Tay Sach’s and Huntington’s Diseases.
Parents who can afford to utilize PGD have the opportunity to select embryos for implantation that are free of certain genetic disease markers. From a public health perspective, PGD has the potential to reduce rates of disease and raise life expectancy and quality for future generations.
It’s also incredibly expensive: the cost of one cycle of PGD and in vitro fertilization can run between $12,000 and $18,000, and is rarely covered by health insurance. As it stands, PGD is essentially a modern, high-tech incarnation of eugenics. And, right now, PGD regulation in the United States is virtually non-existent. We are the only country with access to this technology that does not regulate it in some form.
As is the trend with most American health care, any positive effects from PGD are likely to be reserved solely for society’s upper crusts. While it certainly deserves considerable legal regulation and ethical consideration, much of this threat could be neutralized by a more equitable and just health care system in general. New high-cost technologies like PGD will only serve to deepen the divide between the health outcomes of the rich and the working classes. As long as the American health care system bestows the best treatment to the highest bidders, we will continue to be a socially, economically, and medically segregated country. Without universal access to new medical technologies, within just a few generations, class may no longer be just a matter of economic resources, but of our very genetic code.
This article was written by: Colleen Joy McCullough
Colleen Joy McCullough recently graduated from San Francisco State University with a B.A. in sociology. She is an agitated civilian and outspoken feminist.
1. According to the National Cancer Institute: “about 12 percent of women in the general population will develop breast cancer sometime during their lives. By contrast, according to the most recent estimates, 55 to 65 percent of women who inherit a harmful BRCA1 mutation and around 45 percent of women who inherit a harmful BRCA2 mutation will develop breast cancer by age 70 years.” National Cancer Institute (NCI), Fact Sheet: BRCA1 and BRCA2: Cancer Risk and Genetic Testing, Bethesda MD: NCI, 2013. Available online at http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA.
i. Centers for Medicaid and Medicare Services (CMS), The Center for Consumer Information & Insurance Oversight, Affordable Care Act Implementation FAQs – Set 12, Baltimore: CMS, no date. Available online at: http://www.cms.gov/CCIIO/Resources/Fact-Sheets-and-FAQs/aca_implementation_faqs12.html.
ii. Sheppard VB, Mays D, LaVeist T, et al. “Medical Mistrust and Self-efficacy Influence Black Women’s Level of Engagement in BRCA1/2 Genetic Counseling and Testing,” Journal of the National Medical Association 2013; 105(1): 17-22.
iii. Centers for Disease Control and Prevention (CDC), Breast/Ovarian Cancer — Clinical Validity. Version 2004-3, Atlanta: CDC, no date. Citing: Gao Q, Tomlinson G, Das, S, et al., “Prevalence of BRCA1 and BRCA2 mutations among clinic-based African American families with breast cancer,” Hum Genet 2000: 107(2): 186-191; Panguluri, RC, Brody LC, Modali R, et al., “BRCA1 mutations in African Americans,” Hum Genet 1999; 105(1-2): 28-31; Olopade, OI, Fackenthal JD, Dunston G, et al., “Breast cancer genetics in African Americans,” Cancer 2003, 97(1 Suppl): 236-45.
iv. Centers for Disease Control and Prevention (CDC) Breast Cancer Rates by Race and Ethnicity, Atlanta: CDC, 2012. Available online at: http://www.cdc.gov/cancer/breast/statistics/race.htm