Observations Medicine and the Media

Angelina Jolie’s double mastectomy and the question of who owns our genes

BMJ 2013; 346 doi: http://dx.doi.org/10.1136/bmj.f3340 (Published 22 May 2013) Cite this as: BMJ 2013;346:f3340
  1. Richard Hurley, deputy magazine editor, BMJ
  1. rhurley{at}bmj.com

The film star’s announcement of her risk reducing surgery brought breast cancer to the top of the news agenda. But her BRCA1 mutation also drew attention to the issue of control over access to gene sequences, writes Richard Hurley

“Today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action,” the Oscar winning Hollywood actor Angelina Jolie said in the New York Times on 14 May.1 The seemingly extreme action that she took was prophylactic bilateral mastectomy. And the tests for breast cancer that she mentioned are controversial, because they are controlled by a single commercial company that has been allowed to patent the underlying genetic sequences.

Less than three weeks after her breast reconstruction the New York Times ran Jolie’s opinion article to explain why she had made her decision. “To be proactive and to minimize the risk as much I could,” the star of the Tomb Raider films wrote.1

In 1000 frank words the 37 year old described wanting to “take control of” the inherited “faulty” gene BRCA1 that she carries, the same mutation that led to ovarian cancer in her grandmother and her mother, who died aged 56. The mastectomy had reduced Jolie’s lifetime risk of breast cancer from 87% to 5%, she wrote, “although the risk is different in the case of each woman.” She has a 50% risk of ovarian cancer and intends next to undergo an oophorectomy.

Jolie decided to go public “because there are many women who do not know that they might be living under the shadow of cancer.” They do now: the original New York Times Twitter post was retweeted almost 5000 times and received almost 2000 comments, many from women with BRCA mutations. Her story made the front pages of most if not all the UK national newspapers. “Now Angelina can’t wait to marry Brad” simpered the Mail,2 and a Google search of online news postings yielded more than 2000 results.

“The press have handled it responsibly. This might alert women with a family history to at least seek genetic counselling,” the surgical oncologist Michael Baum, who specialises in breast cancer, told the BMJ. Jolie’s “a great ambassador—I can’t help but admire her,” he said.

The US National Association of Science Writers’ blogger Tabitha M Powledge described the story as “the single most-blogged-about medical topic” in the past five years.3

The story immediately became the media pundits’ must mention topic, and health campaigners, politicians, and celebrities have lined up to heap admiration on Jolie. She is “brave” and “an inspiration to many,” said the UK foreign secretary, William Hague.4 The television presenter Sharon Osbourne, who underwent the same procedure last year, called Jolie “a vision.”5

But not all share this view. Barbara Kay, a columnist for the Canadian National Post, wrote that mastectomy was a “no-brainer” for women at high risk of cancer. “‘Brave’? ‘Heroic’? How about ‘rational’ or ‘normal’?” she asked.6 Olivia Barker, a USA Today reporter, wrote that while Jolie was “smart and right” to have had surgery, the media reaction had gone too far. “‘Major surgery’ is having a double mastectomy to try and save your life, like I did. Radical is going under the knife in hopes that . . . your cancer hasn’t spread to scores of lymph nodes. It’s not broadcasting a surgery that’s more headache than hardship.”7

Jolie started the procedure in February, with surgery to preserve her nipples. She had the major surgery two weeks later: “You wake up with drain tubes and expanders in your breasts. It does feel like a scene out of a science-fiction film. But days after surgery you can be back to a normal life.”1

Meanwhile, with Jolie’s approval, her doctor has detailed the surgical regimen. On the website of the Pink Lotus Breast Center, Jolie’s Beverly Hills clinic, the breast surgeon Kristi Funk blogged that each woman’s case was different but that “the important thing is to be aware of your options.”8 She also explained the stages in identifying risk, considering mastectomy, and the surgical procedure, along with details of the drugs and supplements that Jolie took to prepare for and recover from the operations.

Jolie never seems to have shied from using the media to discuss issues pertinent to her health and has previously been frank about illicit drug use, suicidal ideation, and self harm. She is also known for her humanitarian conscience: she’s a special envoy of the UN High Commissioner for Refugees.

Unsurprisingly, then, Jolie used her New York Times article to draw attention to the disproportionate burden of the cost of paying for BRCA mutation testing. “The cost of testing for BRCA1 and BRCA2, at more than $3000 [£1980; €2330] in the United States, remains an obstacle for many women,” she wrote.

Part of the reason for this hefty price tag is that Myriad Genetics, a US biotechnology company, holds patents for the BRCA1 and BRCA2 sequences and so has a monopoly, at least in the United States, on the tests for defects in these genes that cause cancer. After publication of Jolie’s New York Times article, Myriad’s share price closed up 3%.9

Jolie’s announcement comes at a key time, because these patents begin to expire in 2014. Indeed, on 15 April 2013 the American Civil Liberties Union and the Public Patent Foundation, on behalf of medical professionals, geneticists, and patients, argued at the US Supreme Court that these human genes and mutations were natural and therefore not patentable.10 But the company has argued that specific isolated DNA molecules should be eligible for patenting. The court is expected to rule before July.

Jolie described being “empowered” by double mastectomy and has found her reconstructed breasts “beautiful.”

“But Angelina Jolie’s a one off,” Baum told the BMJ. “She’s exceptional in every way. For the majority of women it is catastrophic. It’s a threat to their femininity and self confidence. It’s essential that there is counselling and psychological support.”

Regardless, for the world’s most beautiful woman, as decreed by numerous glossy magazines over the years, to come out smiling after such a challenge to her womanhood, coupled with the unerring support of Brad Pitt, People magazine’s one time “sexiest man alive,” surely means that the topics of breast and ovarian cancer and radical surgery are no longer off limits.

Notes

Cite this as: BMJ 2013;346:f3340

Footnotes

  • Competing interests: I have read and understood the BMJ Group policy on declaration of interests and have no relevant interests to declare.

  • Provenance and peer review: Not commissioned; not peer reviewed.

References