Claire's Reviews > Pandora's DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree

Pandora's DNA by Lizzie Stark
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it was amazing
bookshelves: disease, science

This book was a great read, I found it hard to put down. I loved the mix of personal family history and history of science—you come away with lots of interesting tidbits.

I enjoyed learning about Mary-Claire King, an admirable researcher who not only discovered the role of BRCA mutations in inherited cancer, along with other important discoveries, but also mixed her love for genetics with political activism beginning with her time at Berkeley and beyond (e.g. she developed genetic techniques for reuniting separated families in Argentina after the Dirty War). There is also especially interesting discussion surrounding the moral question of whether it makes sense to patent a gene (culminating in the Supreme Court case against Myriad Genetics who held a monopoly on BRCA testing): Would the test have existed if there was no financial incentive for a big company to invest huge resources into cracking the problem? Is is ethical to block patients from getting a second opinion, or to set testing costs at a premium due to monopoly? The history of developments in breast cancer treatment through history, with many innovations linked to the battlefield, is also very interesting (there is some overlap here with the book by Mukherjee but it was good to get a refresh).

Stark describes well the “Pandora’s box” opened by such genetic testing. On the one hand, the advance of science allowing one to ascertain that they have a 70% or higher risk of breast cancer and a 30% or higher risk of ovarian cancer is a gift allowing one to take action. But at the same time the options left to you still seem barbaric: amputation of major organs. If you decide to have kids, do you choose IVF and screen out the BRCA mutated embryos? Is a BRCA mutation such a horrible thing that one should be selected out of existing in the first place?

I think this is an important book for anyone to read. But having a BRCA mutation myself, it struck a particular chord. I’m in the pre-surgery phase, so can’t speak to that part of the book, but can definitely relate to the weight of family history and the anxiety of constant screenings that come back with ambiguous results. I appreciate reading about the later parts of her journey before going through it myself. She does a really good job describing the feeling of loss of femininity, even as someone who was not very “girly” to begin with. As well as her battle to advocate for herself when faced with medical professionals who uniformly say that 30 is too young for a mammogram (not if you have a BRCA mutation) or condescending mansplaining surgeons who think they know best what their patients want (she eventually found a good one).

The author is also aware of her own privileges and comments on it. There are many additional issues that are skirted by being white, cis, middle class, well educated, etc. For instance African American BRCA carriers are more likely to get an ambiguous result when testing. And there is not good information available for supporting trans BRCA carriers.
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Reading Progress

October 15, 2022 – Started Reading
October 15, 2022 – Shelved
October 15, 2022 – Shelved as: science
October 15, 2022 – Shelved as: disease
October 16, 2022 – Finished Reading

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