When a journalist decides to record a difficult personal journey, the rest of us benefit in a multitude of ways. In Pandora's DNA: Tracing The Breast Cancer Genes Through History, Science, and One Family Tree Lizzie Stark shares not only her personal story, but her journalist's search for all the facts and the backstory.
As she explores and explains the history of breast cancer and the evolution of its various treatments, Stark segues to stories of her grandmother's breast cancer experiences and those of her great aunts and their daughters. She relates the story of her mother's struggle with breast cancer and later radiation treatments for thyroid cancer. Small wonder that Stark thought she'd be dead in her early thirties.
Stark presents an in-depth review of the science and history of the search for specific disease-related genes in the human genome. She concentrates on the two genes most closely related to high probabilities for development of breast cancer and ovarian cancer, BRCA1 and BRCA2. It took nearly 20 years to hunt down the BRCA1 gene, the gene associated with the majority of inherited breast cancer cases. Because of technological advances during the intervening years it was possible to locate and clone BRCA2 just a year later.
Aside from the story of the search for the genes there is the story of the lab/corporation that held patents on those genes, the high price of genetic testing, questions about who owns or should own the genes and the procedures and who really benefits from that system. Even as a court case unfolded that eventually decided that human genetic material couldn't be patented, Stark showed the other side of the argument, describing the amount of time and money corporations sink into developing those procedures.
The cost of a genetic test for the breast cancer genes goes much deeper than any wallet, as Stark describes in her wrenching account. Not knowing is agony. Knowing, when the results are positive, is no relief.
As Angelina Jolie famously demonstrated, there is one option available that can ensure the least likelihood for carriers of breast cancer genes to develop the disease. Remove all breast tissue, healthy or not.
It is, however, an agonizing decision to make. To a young woman like Stark, who has not yet had children, it's not really about deciding "if," but is only about deciding "when." Unfortunately, the sooner the better is the generally the best answer. The choice then becomes: have a child now, when the plan was to wait a few years; or forgo having a biological child who may inherit the genes. A devoted and supportive husband and family was no small consideration in Stark's decision-making process. But the family history was certainly a galvanizing influence.
In the story of her search for the right surgical team, Stark included some of the interesting history of plastic surgery and a detailed description of the procedure she would undergo. She also didn't skimp on the emotional impact it had on her or on other women she spoke to who had experienced the same procedure.
This well researched and written personal story is informative and inspirational. It should be required reading for young women on the fence about mammography and breast exams. Just do it.
Stark's shorter writing has appeared on The Today Show website, The Daily Beast, io9.com, The Philadelphia Inquirer, and elsewhere. For eight years, she served as editor-in-chief of the literary magazine Fringe, dedicated to political and experimental writing. She holds an M.S. in journalism from Columbia University and an M.F.A. in fiction writing from Emerson College. Visit her website.
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