Abstract
In Waiting for Cancer to Come, Sharlene Hesse-Biber tells the stories of women who are at higher than average risk for breast and ovarian cancer due to genetic mutations. She interviews 64 women who tested positive for mutations on the so-called breast cancer (BRCA) genes, which are 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 the BRCA genes develops cancer. However, many of the women interviewed also had a very strong family history of cancer together with a blood relative that either died from the disease or tested positive for one of the mutations, thereby increasing the odds. 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. These options do little to reduce cancer anxiety. Those with confirmed (or sometimes suspected) genetic mutations live in a state of waiting—“waiting for cancer to come.”
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, Hesse-Biber cautions that the hype surrounding genomics has contributed to a culture and an industry that undermines its potential.
Genetic tests promise to give consumers a competitive advantage over the disorders that lay dormant but ready to strike, fueling 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 $1,400 to $4,000, not always covered by insurance. Moreover, the industry too often fails to give patients the resources to deal with their test results and make informed choices. 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. Despite this, the desire to feel in control impels some toward genetic testing as a way to feel empowered.
The interviewees were worried about their cancer risk from a young age, seeking confirmatory information later in life when they were more equipped to handle it. More information however did not always result in empowerment or clear decision making. Decisions about genetic testing were more elaborate than simply evaluating statistical probabilities and odds ratios. 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. Pre- and posttesting decisions reflected a broader nexus of decision making within the contexts of women’s lives. Factors such as age, employment, ethnicity, education, marital status, presence of children, family history, and firsthand experiences of cancer play a role, along with perceived levels of social support (or stigma) within families as well as geographically bounded and online communities. Genetic test results did little to reduce uncertainty or the guilt associated with being bound by blood to one’s family tree.
Waiting for Cancer to Come weaves together women’s beliefs and experiences of genetic testing and its impact on their lives, families, and futures. Like most women who get tested, most of the women in this study were white, middle class, and well educated. Poor women and women of color barely enter the BRCA conversation at all, rarely receive genetic counseling, or if they do, may not have access to medical interventions. Despite this homogeneity, interviewees were diverse in the reasons they chose to have genetic tests. Their detailed accounts of how they prepared for the test, made sense of the results, shared their findings with others, and made decisions about what to do with the information and cope with the aftermath are a window into the complexity of being alive in a genomic age.
Having lived with cancer, lost family members to cancer, and experienced the uncertainty that comes with increased cancer risk, Sharlene Hesse-Biber not only offers a nuanced exploration of genetic testing, she skillfully demonstrates the power of reflexivity and the inductive method. 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.