Genetic testing, cancer risk, and Angelina Jolie’s choice

Angelina Jolie’s New York Times op-ed announcing for the first time that she underwent a double mastectomy to reduce BRCA-related breast cancer risk was welcome news in several respects. She is very specific, for instance, regarding the exact estimation of her risk, the kind of detail you do not often see in news reports and other public testimony about BRCA.  (BRCA-related risk is highly variable: 45-90% for breast cancer, 10-60% for ovarian cancer.)

Jolie also mentions the high price-tag associated with just the test itself, a point that has been raised for some time, and a topic that will be addressed this summer as the Supreme Court decides whether to accept Myriad Genetics’ (the company that owns the patents to the BRCA1 and BRCA2 genes) argument for patent protection. And finally, Jolie observes that BRCA mutations explain just a small percentage of breast and ovarian cancer cases. What she does not say, but is worth pointing out, is that more than half of all breast cancer cases remain unexplained. As the organization Breast Cancer Action has often noted, we need to fight for true “prevention” of breast cancer, which would include a radical shift in the way we regulate toxic chemicals.

Jolie understands herself to be acting not just as a mother but also as a role model for other women. This would make sense if BRCA testing were relatively new. However, it is anything but—BRCA tests have been around since the mid-nineties, and mastectomies much longer than that. In fact, women have been electing to receive prophylactic mastectomies due to familial risk well before the BRCA genes were described by researchers and a test for mutations was developed. Yet in 2013, the choices for high-risk women are the same: surveillance, surgery, or cancer drug therapy. Placed in this historical context, the question should not be “Why aren’t more women getting tested and acting on that knowledge?” but rather, “Why are the interventions the same almost twenty years after the genetic test became commercially available?”

Although new ways for reducing BRCA risk have failed to materialize (even if the plastic surgery methods associated with breast reconstruction have improved dramatically), what has occurred over the last twenty years has been a subtle yet indelible shift in what “risk” means. Indeed, BRCA mutations can hardly be said to infer “risk” at all, since the interventions women undergo are the same, or in the case of double mastectomy, even more extreme than what many women with breast cancer actually undergo.

“Risk,” then, really means “disease” in the post-BRCA age—marked as it is by an ethical obligation to act on cancer risk even if that action increases risk in other ways (as in the case of BRCA related ovary removal and subsequent fatal heart disease risk that early surgical menopause can entail). This, too, is an age of the successful feminist argument that there is nothing “natural” to femininity (thus enabling the claim that one is rejecting conventional notions of beauty and gender by undergoing mastectomy and oophorectomy), and the creation of an entirely new citizen-patient: the “previvor.”

With the development of better breast reconstruction techniques, the conceptual shift to “risk” being something you act on as if you actually had breast cancer, and the emergence of a new discourse of the empowered “previvor,” it is hard to imagine how any woman with a BRCA mutation will have a choice in any meaningful sense of the term. Can living with BRCA risk ever be thought of as an informed, empowered course of action? Will we see new ways of ameliorating BRCA risk that do not entail major and risky operations? Breast cancer is indeed an epidemic. Yet epidemics, as Paula Treichler wrote, too often close off critical, theoretical discussion that is often needed in order to properly evaluate and contextualize developments in medicine and in the broader culture. All the more important, then, that we continue to understand BRCA testing and mastectomy, and the choice to undergo one or both. After all, the choice is constrained as much by culture as it is by biology.

Kelly E. Happe is Assistant Professor of Communication Studies and Women’s Studies at the University of Georgia. She is the author of The Material Gene: Gender, Race, and Heredity after the Human Genome Project (NYU Press, 2013).

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