Monday, 28 May 2018

Book Review: Pandora's DNA by Lizzie Stark

2 stars: Very little science, and not as much research or interviews with major players as I would've liked.

Pandora's DNA is the story of Lizzie Stark's family history of breast and ovarian cancer, her BRCA mutation and the decision of what to do about it: risk dying young like her female relatives did, undergo intense surveillance for the foreseeable future, or take preventative action like a double mastectomy.

If I'd known it was just that, I probably wouldn't have read it; I'm sure lots of people would enjoy it but I'm not really interested in a personal history. The subtitle claimed it would also be about the science of the BRCA mutations, and I think I saw a Goodreads review saying the book had too much science content for them, and that's why I read it, because I like popular science books with a very high science content.

Instead there was a lot about her female relatives' experience of breast cancer, mastectomies and dying young, talk of family reunions, etc., which I just wasn't interested in. Obviously it's a fine and important topic to talk about, but I went in expecting a science book so it was jarring and unfulfilling from that perspective.

She did have some parts that interested me, and I think she did at least avoid some common genetics faux pas by saying it's a mutation in the gene that's the problem, not having the BRCA gene itself, and I think she even clarified that there are multiple possible mutations that could cause the effect. It was quite interesting learning about how researchers used Mormon and Catholic families (in Utah and Ireland respectively, I think) to track down the genes because they have large families and, at least for Mormons, good genealogical record-keeping so they could track who in a family was affected by breast or ovarian cancer (the prevalence of which can be greatly increased by having a BRCA mutation).

But even in the more sciencey parts there were problems. Mainly I just didn't feel like she was necessarily the best person to write this book. Yes, she had personal experience of the issue, but in my opinion a hallmark of good non-fiction of this sort is having interview access to major players in the event so you can get insight into it that people couldn't get just by Googling/doing a bunch of archival research (which is also important! But if the people are alive you might as well just talk to them). For example, there was a section I was looking forward to about the company Myriad Genetics trying to patent the BRCA gene and the whole debate about whether or not it's fair to patent a gene (or a test for a form of that gene). I thought she might talk to people on each side of the issue, maybe an exec from Myriad or one of their lawyers, but she just said things that seemed quite Google-able and talked to one person who didn't seem super involved in it and thus didn't have a ton of information. I might be misremembering the details slightly but it did seem lacking there and disappointing in its lack of detail.

The book was quite anticlimactic as well; she gets the double mastectomy partway through, then just spends ages wondering whether to get her ovaries removed but I'm not sure if she ever decides.

Overall, quite disappointing.

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