I have to admit that I read, with relative awe, the opinion article by Angelina Jolie in the NYTimes the other day. If you haven't read it, you should. Link here. I have always been somewhat of a fan of Jolie. I like the way she operates sometimes, and I like that she defies convention. I also like that she decided, of her own will, to have kids. I always admire people who think outside the box. I also like the fact that she does a lot of humanitarian things throughout the world. While I don't always agree with her causes, I think it's meaningful that she uses her voice to bring attention to causes that matter to her.
In her opinion article, she talks about her choice to have a preventative double mastectomy because she harbors some mutations in a gene linked closely to breast cancer (BRCA1 or BRCA2 - these are pronounced "Bra-Kah"). I think it's very brave for a woman to come forward and to talk about how her body is not perfect. Especially a woman who literally maintains her body in a particular manner as to contribute to all of society's fantasies. The choice to have a double mastectomy, or any elective surgery, is admittedly an extremely personal one, and I applaud her for her honesty and her candor.
A few things struck me when reading this article. As a scientist, I thought it might be helpful to put down my thoughts.
1) What Jolie has is a mutation in BRCA. All humans, men and women, have the BRCA genes. They are proteins that repair DNA when it's been damaged. What Jolie has is a mutation in those genes. Making her proteins faulty. Or unable to properly repair DNA. For a biologist this is an important distinction.
2) Mutations in BRCA are not explicitly causative of cancer. Some mutations in BRCA are associated directly with cancer, others are not so clear. Similarly, although BRCA is almost always talked about in conjunction with breast cancer, mutations in BRCA can also contribute to other cancers of the body as well (meaning, a double mastectomy can reduce your risk of cancer, but not eliminate it). Cancer is caused by any myriad number of ways including mutations in important DNA repair proteins. However, the presence of a mutation is not necessarily indicative that cancer will develop.
3) The cost of testing for mutations in BRCA is outrageous. Jolie admits that the cost for testing is $3000 in the US. This is a cost that is likely NOT covered by insurance. This cost is OUTRAGEOUS and needs to come down now. The problem in the case of BRCA is twofold. Firstly, rates of sequencing regions of DNA have been steadily decreasing over the last five years, meaning this cost should drop significantly. If more labs can sequence BRCA, then the cost should come down, right? Wrong. A company called Myriad Genetics decided to PATENT mutations in the BRCA genes (how the hell you can patent something that occurs naturally? I will never know...) and not share those mutations with the rest of the scientific community. This allows them to be the only company allowed to do genetic testing on BRCA. This upsets me immensely, obviously.
4) We need to have a conversation about health care. I think I'm beating a dead horse at this point, but we need to talk about health care coverage for women. We need to talk about whether preventative, reconstructive, double mastectomy is covered by insurance (I am sure it's not in many cases). We also need to to have some large scale studies to determine whether double mastectomies actually prevent cancer (there was a huge rash of radical hysterectomies in women in the 1970s-1990s when a pap would come back abnormal - hey! if you're not using it, get rid of it, right? This led to a large number of women being on hormone replacement therapy, which can cause an increased risk of breast cancer....seems like a Catch-22 if I've ever heard of one). We also need better screening for those other cancers, namely ovarian, which is often not caught until it's too late.
5) We need to see women as more than just tits and ass. Reading the internet can often cause me to lose all faith in humanity in a few short minutes. I applaud Jolie in her decision, but I'm upset by the callous reaction both men and women have had to this article. While I realize that Jolie is in a unique position as an actress, famous person, rich person, etc, it's disheartening to hear commentary about her personal decision that is not supportive, or that is based solely on her looks, her body, or her ability to bear and nourish children. I hate to state the obvious, but her personal decision is her personal decision, whether that be to have children, to have a boob job, to have a double mastectomy or to have a tattoo. In a perfect world, we would recognize her bravery at coming forward to talk about her experience, we would value the telling of her experience for what it is, and we would hope to god to never be faced with such a daunting choice. And this obviously goes not only for our judgements of Jolie, but also for our judgments of other women in the world as well.
Altogether, I think Jolie is brave for coming forward about her decision. And I think it's something the world needs to talk about.
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