Sometimes it is hard to remember that science is not infallible. That it is a practice conducted by human beings – human beings who have ideologies, who have biases, who are doing the best they can with the knowledge that they have at the moment. Addressing the role of humans in medicine, in particular, brings with it its own can of worms – or, more appropriately as Lizzie Stark’s title suggests, it’s a Pandora’s Box full of questions that, once opened, cannot be ignored.
This myth of infallibility shatters quickly when we are confronted with a problem for which science has found no real solution. Even more so when it is a problem that addresses one portion of our population in particular.
The history of “women’s” medicine is a convoluted one, rife with value judgments and questionable practices that today, with the benefit of hindsight, we recoil at. But Stark lifts the veil to show us that this isn’t a problem to be thought of in the past tense. In Pandora’s DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree, Stark takes us on a fascinating and, at times emotionally challenging, journey unpacking the reality of medicine’s attempts to address “women’s” cancer through time.
In a double-helix spiral, Stark lifts the magic curtain between us and medicine to show how
the story of BRCA is partly one of scientific research and medical treatments, researchers racing to unearth the human genome’s treasures, and military doctors in combat zones developing the crude tools that will later be used to rebuild BRCA-carrier Angelina Jolie’s de-breasted chest, [as well as] the story of individual women and men choosing knowledge over ignorance and making extraordinarily difficult decisions. (6)
One of these individuals is herself, which is what makes this book as effective as it is. Without her personal story intertwined, Pandora’s DNA would still be a compelling read. But by inviting us into her deeply personal family story and taking us along with her in her decision-making process toward double-mastectomy, Stark makes this real. Real in a way that is touching, uncomfortable, heart-rending, and ire-inspiring. Real in a way that makes us want to scream at the medical researchers of the past and present: “Why aren’t you trying harder?”
Stark’s book does not give us answers – it would be indelicate to do so – but it does confront us with questions that are hard to turn away from. What does it say about us as a culture that we are okay with allowing a company to patent a gene sequence – a sequence that is naturally occurring and not fabricated? What does it say about our concerns of accessibility to health and what research we fund? About the costs of testing for BRCA1 and BRCA2? About the treatment options for those testing positive?
This text is a must read for anyone interested in the history of medical research, for those interested in the intersection of science/medicine and public policy, and for anyone concerned about health issues that, while not solely limited to women, are situated most frequently in the female body.
Pandora’s DNA is now available for pre-purchase, to be shipped October 15th. Lizzie Stark will be touring the US for much of October and November reading from her book. Click here to see if she will be reading at a location near you.
- Hardcover: 336 pages
- Publisher: Chicago Review Press (October 15, 2014)
- Language: English
- ISBN-10: 1613748604
- ISBN-13: 978-1613748602
Written by Heather Falconer
Heather Falconer holds undergraduate degrees in Graphic Arts and Environmental Science, as well as an MFA in Writing and an MLitt in Literature. She is currently completing her PhD in Rhetoric and Composition, with an emphasis on rhetoric in/and/of science. Heather has worked internationally in academic publishing as both an author and editor, and has taught a wide range of topics from research writing to marine biology in the public and private educational sectors.