Angelina Jolie's Brave Choice

For those who have not yet had a chance to read it, Angelina Jolie published an op-ed in the New York Times on May 14 to reveal her preventative double mastectomy. After her mother died from breast cancer at age 56, she was motivated to get tested for her own risk. She discovered that she had a mutation in her BRCA1 gene, which is one of 2 genes that are strongly associated with hereditary forms of breast and ovarian cancer. Her ‘faulty’ gene can no longer perform its usual tumor suppressor functions and increased her chance of developing breast cancer to 87%, compelling her to undergo surgery.

Her story is shocking on a number of levels, most notably due to her ability to keep her procedure an absolute secret until the appearance of her article. Jolie is a powerful woman, one of the most famous in the world. As part of one of the most well-known celebrity couples, it is not always easy for her to evade the hovering lenses of sneaky paparazzi. Imagine the media frenzy that would have resulted over the state of her health if anyone else had leaked the story first. The method behind her reveal, as a product of her own volition, was subtle but moving; it ensured that Jolie maintained control of her narrative so that she could be the voice of comfort and strength to the women who need it, instead of placing her under scrutiny and scandal at the hands of an unforgiving tabloid.

However, Jolie’s announcement also draws attention to another startling issue that many people may not be fully aware of: the patenting of genes. She published her op-ed in the midst of a crucial Supreme Court case that is currently awaiting a decision. The American Civil Liberties Union (ACLU) recently argued before the Court on April 15 to protest the patents on genes on behalf of researchers, patients, and other health groups. Although it is against the law to patent “products of nature,” the U.S. Patent and Trademark Office (USPTO) has been issuing gene patents on the basis that these gene sequences are “isolated and purified.” For almost two decades, a private biotechnology company called Myriad Genetics has held the patent on BRCA1 and BRCA2. The genes are literally under its control; no scientific study, genetic testing, or examination can be done on either of the genes without first obtaining permission from Myriad. If anyone does get the go-ahead, it’s quite likely that they will be charged exorbitant licensing fees in the process. This creates obvious limitations to scientific advancement since researchers cannot freely perform experiments or exchange ideas regarding the genes, which also happens to be a violation of the First Amendment.

More relevant to Jolie’s piece is how this issue of genetic patenting affects individual patients, which in this case are women who may be unaware of their susceptibility to cancer. Holding the patent for the genetic test for BRCA1 and BRCA2 allows Myriad to control its cost, which currently sits above $3000. This is clearly not affordable for most women and is often not covered by insurance, drastically decreasing the amount of people it should benefit. Because their test once had a false negative rate of roughly 12%, the company decided to offer an additional test to check for mutations that the initial test may not catch, which of course comes with an additional cost to the patient. What’s more, even if an individual does manage to undergo testing, it is impossible to get a second opinion since Myriad has control of the only genetic test available and refuses to allow any other researchers to develop alternatives of their own. As a result, there is no way to confirm the result or even validate its accuracy. The private company is serving itself well while failing on behalf of the public good.

While it is unclear how much public opinion will actually weigh in on the court’s decision this summer, having an extremely public figure exude pathos in favor of more access to testing must surely place some indirect pressure on the court to make genetic testing for the breast cancer gene more affordable for all and ultimately side with the ACLU. In addition to her extraordinary philanthropy, Jolie’s actions this past week demonstrate that it truly is possible for one person to make a difference in the world. By choosing to share her personal story, she bravely offers herself up as an example for women who have not yet taken the leap to determine their susceptibility and for those who are struggling with difficult decisions to make after finding out.

Lauding Jolie for her decision does not take away from the experiences of the many women who underwent the procedure before her. Instead, it provides a voice for them, and a voice for those who may not have even considered the possibility of making such a choice in their own lives. It gives them options. And it lets them know that those options are not as scary as they seem. She specifically mentions that she doesn’t feel less feminine and that the results of the surgery were beautiful; this fear of disfiguration is a very real concern among many women, but having one of the most iconic women in the world reassure them otherwise can be an important motivating factor to put aside their fears and at least begin to have the necessary conversations. In this way, she manages to put a  soothing spin on a procedure that is no easy feat to endure. She mentions that she wants to be around for her children as long as she can without ever letting them worry about losing her. Rather than just brushing off the pain and side effects of the procedure, she stresses that going through with the surgery is preferable to not dealing with risk factors before it’s too late.

And for that, she deserves all the credit.