Waiting for Cancer to Come - A Book Review

When the Human Genome Project started in 1990, there were fewer than 100 genes associated with human diseases. Now with the human genetic code fully mapped there are thousands of diseases and disorders associated with genetic sequences or mutations, along with genetics-based (i.e., “personalized”) approaches to disease prevention, detection, and treatment. There are genomic applications in pre- and postnatal testing and rare diseases, sequencing of tumors to develop targeted therapies, and the use of germ line variations to better understand the potential efficacy and risks from some pharmaceuticals.

While beneficial in many regards, genomic data is no panacea. Genetic tests promise to give consumers a competitive advantage over the disorders that lay dormant but ready to strike. Yet the hype surrounding genetics fuels an increasingly “at-risk” society that fortifies a rapidly growing industry in which genetic testing and biomedical surveillance is increasingly routine. Customers can order a personalized genome kit for just $99. More targeted testing ranges from $1400 to $4000, not always covered by insurance, and the industry often fails to give patients the resources to deal with their test results and make informed choices. Add to this, that most diseases do not result from a single genetic cause but instead from a combination of genetic, hormonal, environmental, and social factors making it difficult to know what to do with genetic information. Still, the desire to feel in control of one’s health impels some toward genetic testing even if the jury is still out on what the results will actually provide.

Hesse-Biber COVERSharlene Hesse-Biber’s new book Waiting for Cancer to Come offers insight into the complexity of living in a genomic age. She tells the stories of women at higher than average risk for breast and ovarian cancer due to genetic mutations, interviewing 64 women who tested positive for mutations on the so-called breast cancer (BRCA) genes (known to increase overall lifetime risk of breast cancer in women and men in addition to ovarian, prostate, pancreatic, and testicular cancers). Not everyone who inherits mutations in these genes develops cancer. But, increasing their odds, many of the women also had a very strong family history of cancer together with a blood relative who either died from the disease or tested positive for one of the mutations.

Hesse-Biber’s interviewees were worried about their cancer risk from a young age. The National Cancer Institute advises people with mutations on the BRCA genes (and others) to practice “healthy behaviors” and have access to monitoring, prophylactic surgeries, and chemoprevention, but these options do little to reduce cancer anxiety. Those with confirmed (or sometimes suspected) genetic mutations live in a state of waiting.

The women in this book sought information about genetic testing later in life when they felt more equipped to handle it, and their decisions were more elaborate than simply evaluating statistical probabilities and odds ratios. Women’s detailed accounts of how they prepared for the tests, made sense of the results, and made decisions about what to do with the information and cope with the aftermath, open a window into beliefs and experiences of genetic testing and its impact on people’s lives, families, and futures.

More genetic information, for example, did not always result in certainty, empowerment, or clear decision-making. Even test results thought to be desirable, such as “no detectable alteration” or “unlikely alteration” accompanied the caveat that other “bad genes….not yet identified” may impact risk. Genetic tests also did little to reduce the guilt associated with feeling bound by blood to one’s family tree.

Clearly, there is a place for genetic testing for personal and clinical decision-making. Women diagnosed with breast cancer at younger ages, for example, are more likely to have a genetic mutation, and genetic mutations may be responsible for more breast cancer cases in Black women than previously known. At this point, however, the lack of clear evidence about what genomic findings mean for the development, progression, and treatment of certain diseases suggests that those decisions will remain uncertain.

Waiting for Cancer to Come is a must read for those interested in women’s health, science and technology studies, medical sociology, and feminist and qualitative methods.


Waiting for Cancer to Come: Women’s Experiences with Genetic Testing and Medical Decision Making for Breast and Ovarian Cancer. By Sharlene Hesse-Biber. Ann Arbor, MI: The University of Michigan Press, 2014, 226 pp., $50 (hardcover); $24.95 (paper).


Elements of this article were excerpted from a pre-published article on “Waiting for Cancer to Come” and printed with permission from Gender & Society.

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* GAYLE IN THE MEDIA *

"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

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