Celebrity Breasts and Corporate Gene Patents

Angelina Jolie’s op-ed in The New York Times was big news. Jolie shared her family history of cancer, her own genetic mutation, and her choice to have prophylactic surgery– agonizing decisions faced by other high risk women.

FILE: Actress Angelina Jolie Reveals She Underwent a Preventative Double Mastectomy

Actress Angelina Jolie leaves Lancaster House after attending the G8 Foreign Ministers’ conference on April 11, 2013 in London. (OLI SCARFF / GETTY IMAGES)

But this is a bigger, more sinister story than one of a celebrity’s personal medical decision. Jolie insists that all high risk women need access to “gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live” and notes that the $3,000+ test is out of reach for too many women. What she does not talk about is why the cost of the test is out of reach for many women.

Myriad Genetics holds patents on the human BRCA1 & 2 genes and therefore is the only company that offers the BRCA test. Other companies say they could provide a better test for a few hundred dollars but this monopoly gives Myriad control over research, testing, diagnostics and development of treatments related to the BRCA genes.

In 2009, Breast Cancer Action joined researchers, genetic counselors and cancer patients in a lawsuit to overturn Myriad Genetics’ patent on the so-called “breast cancer genes.” The case is currently before the U.S. Supreme Court and we expect a ruling this summer.

In describing her surgery, Jolie is focused on reassuring high risk women who might be considering a prophylactic mastectomy that the surgery is manageable and perhaps not as bad as they might fear. She discusses how small the scars are. She talks about “beautiful” results. She insists just “days after surgery you can be back to a normal life.”

In explaining why she is happy with her own choice, Jolie does not explore the many and varied side effects and risks of the surgery she chose. Surgery always comes with risks and disclosures. In addition, breast implants are considered “high risk” devices by the FDA. Four out of ten women who have had a mastectomy will need additional surgery within three years of getting implants.

The effects of surgical oopherectomy (removal of ovaries) on pre-menopausal women are even more serious. These women are thrown into immediate menopause and the subsequent effects which range from the discomfort of hot flashes to increased risk of cardiovascular disease, osteoporosis, and other negative health consequences.

None of this is to pass judgment on or criticize Jolie’s own medical decision but rather to highlight the importance of a balanced discussion, one that includes consideration of the full range of risks and side effects. Jolie shares her own story with the world. She does not—nor should she—provide balanced medical counsel. However happy Jolie feels with her decision, too many women struggle with what they feel are all around bad choices. The call for better options comes both from women at high risk of breast cancer and from women who have already been diagnosed with breast cancer.

The increased risk of breast and ovarian cancer associated with BRCA mutations cloaks an important observation. Not every woman with a mutation will develop cancer in the course of her life. As we grapple with a breast cancer epidemic in this country, we need more research into the mechanisms of breast cancer and true prevention. After 30 years of breast cancer awareness, we are in a perverse situation where the average woman vastly overestimates her individual risk of breast cancer. Most women with breast cancer do not have an inherited genetic mutation. For those who do, there is no question that access to the genetic test and accompanying genetic counseling, free of corporate influence, provides potentially life-saving information. Whether high risk or average risk, all women need access to quality information free of corporate influence and appropriate health care based on their individual choices.

Behind Jolie’s publicity grabbing personal story, is the fact that one corporation owns the BRCA1 & BRCA2 genes. I invite Jolie to join those working to outlaw human gene patents, to call for more research into mechanisms of breast cancer, to demand access to information and health care, and to ensure that every woman can make her own health decision after weighing risks and benefits according to her own individual values and priorities.

Originally published by the Breast Cancer Consortium.

karuna3-296x300As Breast Cancer Action’s executive director, Karuna Jaggar’s vision for health equity awards every woman affected by breast cancer the power and knowledge to make informed decisions that enable them to take control of their healthcare. This includes a woman’s right to access affordable treatment options, to create individualized treatment plans that reflect personal values and priorities, and to avoid involuntary exposure to environmental toxins. Recognizing that social injustices and environmental factors put each of us at risk of developing breast cancer, regardless of family medical history, Karuna insists that personal lifestyle choices will not protect us from breast cancer.

Be Sociable, Share!

"women urged to get screened because it might save their lives. But that’s only 1 possible outcome, and it’s the least likely one" @cragcrest cutt.ly/jei8WJr

“Pink Ribbon Blues”

Paperback includes a new Introduction on fundraising controversies and a color insert with images of, and reactions to, the pinking of breast cancer (2012).

Praise » 

Flyer »

Press Release »

Hardback Cover »

Paperback Cover »

Request Review Copies »

Order the Paperback »


"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today