Technology’s Double-Edged Sword: One Woman’s Story

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Title: Pandora’s DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree
Author: Lizzie Stark
Publisher: Chicago Review Press
Publication date: October 2014
Price: $26.95; hardcover, 336 pages

If we wish to learn more about cancer, we must concentrate on the cellular genome,” wrote Nobel laureate Renato Dulbecco, MD, more than 20 years ago. Dr. Dulbecco and his colleagues in the scientific community realized that sequencing the human genome was vital in fully understanding the biology of cancer. Less than 3 years after the monumental completion of the Human Genome Project, the National Institutes of Health launched the pilot stage of The Cancer Genome Atlas (TCGA) project, which will ultimately render a comprehensive catalogue of the genes involved in cancer. Although the scope of this genetic research project is mind-boggling, the endgame is simple: translating knowledge into better treatment for cancer patients.

However, knowledge of the inner workings of our cellular material prompts questions and medical decisions, some of which prove difficult. For instance, if you were a young woman, would you have your healthy breasts and ovaries surgically removed if you thought it might save your life many years down the line?

That is not a theoretical question for Lizzie Stark author of the affecting new book Pandora’s DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree. Ms. Stark uses her family’s experience of being genetically predisposed to breast cancer as a backdrop to tackle the larger ethical and medical questions that surround germline BRCA1 and BRCA2 mutations. This is an important subject that needs more elucidation, and Pandora’s DNA gives the readers of The ASCO Post a personal look into the quandary of genetic testing, something that has already made its footprint in oncology.

A Family’s Grim Legacy

Ms. Stark’s prologue is mostly background information on breast cancer and basic genetics, which the lay public will find instructive before diving into the book. That said, the author ends the prologue with a pithy observation about our growing knowledge of human genetics and what that knowledge might portend: “Open up the box and the truth will escape. As with Pandora’s fable, you cannot gather up the knowledge or the plagues and stuff them back inside—the tenuousness and blissing of ignorance are gone forever. The only thing left is to cope with the present as best you can.”

As the book opens, we learn that Ms. Stark’s mother received her second diagnosis of cancer, which had spread from her breast to her thyroid gland. By then, she was a 5-year survivor, but the road over those years had been bumpy, filled with emotion and pain. When Ms. Stark learned that every female relative on her mother’s side “had lost their breasts to cancer or the fear of cancer or both,” her life also took on a shadow companion of fear.

She writes chillingly, “By the time I reached my late teens, a graph has imprinted itself on the back of my mind, an image of what life is like, age-plotted on the y-axis. The graph described a rising curve that peaked around age 21 before dropping off sharply. At 30, or a little later, the chart ended.” This is the day-to-day reality of young women who are heavily predisposed to breast and ovarian cancers, and it’s a subject that needs more research and discussion.

Ms. Stark goes on to tell of her own struggle, for a while living an adventurous, risk-taking life, not wanting to miss out on one youthful desire or fling. At 23, she still felt invulnerable—or at least tricked herself into that self-serving delusion. But the self-breast exams and mammograms suddenly became routine.

Costs of Genetic Testing

Then one day, her mother brought up the subject of genetic counseling, and that’s when her feeling of invulnerability fell off the cliff, and her internal battle started, beginning and ending with one question: Do I really want to know if I have the BRCA mutation?

Before the reader finds out the answer to that theme-driving question, Ms. Stark takes a necessary and highly informative detour in a chapter titled Myriad’s Monopoly. Readers of The ASCO Post will be well acquainted with the Myriad Genetics drama, centering on the ethical issue of patenting the human genome, but the author’s personal take on the issue is worth a revisit.

She writes, “In the United States, before 2013, if you wanted to know whether you carried your family’s grim legacy of breast and ovarian cancer, there was only one way to find out: Pay Myriad Genetics—or get your insurance company to pay—upward of $3,000 for DNA sequencing.”

Ms. Stark poses good ethical questions about the legality of one’s genes and the potential to exploit fear into revenue. She sums up the antigene patenting case: It limits scientific research and fails patients by creating cost barriers. Ms. Stark takes a fair look at all sides of the contentious issue, summing up the ethical case for gene patenting: “It provides profit motives for companies to sink research money into discovering genes that effect heritable diseases, minimizes bureaucratic red tape that stalls progress.”

In the next chapter, the reader gets the answer: The author decides to get tested for BRCA mutations. The agony of waiting for the results is drawn with such breath-holding care that everyone who has ever waited for a test result can empathize with her. Ms. Stark gets the call from her oncologist, who says, “I’ve got the results, but I’m afraid they’re not the ones you wanted.”

An Agonizing Journey

From here, she takes us on the agonizing journey that ends, and in some ways begins, with a bilateral prophylactic mastectomy. It is a journey of self-introspection and worries about sexual identity and mortality. Never once does she let the reader down, as she spools out her innermost feelings, rarely dipping into self-pity or misdirected anger. In short, we get to know Ms. Stark, and, despite the difficult scenario, we like her.

The postmastectomy chapters offer good insight into both breast cancer patients and their oncologists, as Ms. Stark meticulously details the symptoms and how she dealt with them. She ends with a message every woman in her situation can appreciate: “Although my BRCA mutation has deeply affected my body, my emotions, and my sense of self, it does not define me.” ■