This is a guest post by RAMRAY BHAT Two weeks ago, tucked in between lurid details of spot-fixing during IPL matches, and an inordinate attention to how Sanjay Dutt spent his first few moments in jail, was an important bit of news about a high profile American movie actor having undergone preventive surgery in order to escape a future encounter with breast cancer. The source of the information was an op-ed written by the actor in The New York Times.
The mainstream Indian media not quite knowing how to report this kind of information first presented it in the blandest fashion and then hurried to the closest cancer hospital to interview its surgeons. The social media took the expected route of initially spouting knee-jerk reactions some of which were misogynous and offensive. The response later evolved into a division between two camps. One hailed the actor for being courageous. The other criticized her for a variety of reasons such as her choice of undergoing surgery without being afflicted with the disease, and her soft advocacy for a detection procedure that is out of the economic reach of a majority of women in her own country, let alone those from the third world. Ruth Fowler’s article from the left-leaning Counterpunch adopted a cavalier tenor and chided the actor for her op-ed with what seemed like nitpicking arguments.
It is important in the scarcity of an informed debate, to understand some of the ethical and scientific questions that have been raised by this issue. Our society has historically objectified its women, slotting them into ‘roles’ they are supposed to be playing throughout their life. Gender-based objectification unfortunately entails understanding women through their anatomies, presuming that is what makes them (un)suitable for performing specific social functions. To make matters worse, the business of publicity that accompanies the forces of capitalism has been particularly harsh on women – one sees their bodies draped over whatever needs to be sold in a market. And this is not new either. John Berger, the social and art critic makes the point that even the historical tradition of painting nudes in oil was essentially consumerist in its politics. In a social milieu where femininity gets equated with women’s body parts, mastectomy (removal of breasts) even after breast cancer is detected is couched as a ‘painful choice’ rather than a default one. To bring this into the public domain by someone who has undergone it and is a well-known celebrity is necessary and admirable.
The actor’s op-ed despite the disapproval of Ruth Fowler is written with a great deal of sensitivity and clarity. The “nod” to those who cannot afford the diagnostic tests is not a “trifling” one. However, there are some other important collateral damages that have resulted from the piece. I will discuss three of them here.
From a scientific point of view our attitude towards cancer has undergone a sea change from being a disease that is the direct outcome of gene mutations to being more of a systemic problem where dysfunctional genes are only a part of the process. Genes simply code for proteins; they are not the decision-makers for how we look, how we function or why we fall ill. Research performed in the last couple of decades has shown that genes inside a cell operate within a context, one that encapsulates the rest of the body, and even the external environment within which we live. In fact inputs from outside the cells continuously signal to the genes inside, switching them on or off or modulating their function. In other words, the path from a mutation to a cancer is not a simple straightforward one, but rather involves a number of inputs, checks and balances.
It is therefore important that when somebody has a mutation in a gene like BRCA1 or 2 (henceforth referred together as BRCA), that the gene is mutated in the DNA of every cell of our body. And yet only a few organs are at risk from turning cancerous. The rest of the body goes on until age or some other disease claims it. This implies that having a mutated gene does not make the tissue cancerous by itself. It is also important to realize that not all women with BRCA mutations end up with cancer. In fact a very small percentage of breast cancer patients have inherited BRCA mutations. Our attitude towards genetic mutations makes them bigger than what they really are – risk factors, not causative agents of diseases. Just the way smoking is a risk factor in lung cancer, age, menstrual history, obesity, and sedentary lifestyles are along with the BRCA mutations, risk factors for breast cancer.
The relevance of undergoing screening for BRCA mutations goes up if one has a family history of breast cancer. And it is by all means important to have access to this kind of information. But the principle of prophylactic (preventive) surgeries based on genetic information gives the impression that the latter is a veritable oracle for our health and wellbeing. The New York Times op-ed mentions for instance that the actor had an 87% chance of contracting breast cancer. It is incredible how this specific number was arrived at. Given that the calculator could not have taken into account the contributions, past and future, of lifestyle, environment and habits, it is at the end of the day, just a number.
Assuming somebody was to have the economic means to avail of such a procedure what would she (or he, men with BRCA can also have breast cancer!) do if the percentage were not 87% but 67%? Or 47%? Are we ready to live with any percentage of risk from a life-threatening condition, however small it may be before resorting to surgery in order to remove what is currently a healthy organ? Moreover, while not affecting every single cell of the body, BRCA mutations are risk factors also for ovarian, cervical, uterine, pancreatic and colon cancers. Removing healthy organs in anticipation of future cancers with varying probabilities of occurrence becomes a potential booster for organ trafficking industry.
There is a second much darker issue involved. The BRCA gene sequence is ‘owned’ in the form of a patent by Myriad Genetics based in Utah, USA. The patent places restrictions on how and where the genetic tests for BRCA mutations may be conducted. Only laboratories affiliated with Myriad Genetics can test samples for genetic mutations in BRCA genes. Not just that, scientists not attached with Myriad cannot even conduct research on BRCA. This prevents the development of BRCA screening tests alternate to the one by Myriad Genetics.
The case of the BRCA is simply a part of an odious trend. Thousands of gene sequences have been patented in the last twenty years. The tests for their sequences, like that of BRCA, are potential commercial products, to be sold in markets with hefty price tags. Patents are given for human inventions: awarding them for natural entities like genes has resulted in legal and ethical wrangles. The American Civil Liberties Union and the Public Patent Foundation of the Benjamin N Cardozo School of Law filed a lawsuit in 2009 on behalf of four organizations representing medical practitioners, scientists, patients and civil society contesting the BRCA patents held by Myriad Genetics. After a roller coaster ride of lower court verdicts alternately upholding and invalidating the patents, the U.S. Supreme Court will be giving its pronouncement on this contentious issue this summer.
As of now, the genetic screening for BRCA1 mutation, as per Myriad, costs a whopping 3000 US$. It would not take an economist to predict that with a sudden increase in demand for the test post this op-ed, its price may well go further up. This would put the test completely out of the reach of an even larger section of the population.
My last grouse is an aesthetic one. Advances in breast cancer treatments show that mastectomy is giving way to breast conserving surgery especially in early-detected cases. In contrast, the removal of entire healthy organs as a prophylactic measure seems to atavistically resurrect a behavior we abandoned when we split off from reptiles. Such an act, which Kristine Mattis calls ‘mutilation’ in her article (also in the Counterpunch), treats body parts as modular units that is compatible with a posthumanist mindset wherein the individul replaces the consumerist society in objectifying her or his own body parts.
In India where countrywide access to basic healthcare remains a pipe dream, the need of the hour is to spread information about self-examination, regular medical check up and the risk factors associated with breast cancer. However, given what the breast surgeon Dr Geeta Kadayaprath has to say in her piece in The Asian Age about the sudden rise in enquiries regarding prophylactic mastectomies, one should not be surprised if the Pink Lotus Breast Center and Myriad Genetics open shop in India sooner than later.
Ramray Bhat is a a postdoctoral researcher on breast cancer at the Lawrence Berkeley National Laboratory, California, USA.