Mercies in Disguise
Author: Gina Kolata
Rating: ☆ ☆ ☆ ☆
The phone rings. The doctor from California is on the line. “Are you ready Amanda?” The two people Amanda Baxley loves the most had begged her not to be tested—at least, not now. But she had to find out.
If your family carried a mutated gene that foretold a brutal illness and you were offered the chance to find out if you’d inherited it, would you do it? Would you walk toward the problem, bravely accepting whatever answer came your way? Or would you avoid the potential bad news as long as possible?
In Mercies in Disguise, acclaimed New York Times science reporter and bestselling author Gina Kolata tells the story of the Baxleys, an almost archetypal family in a small town in South Carolina. A proud and determined clan, many of them doctors, they are struck one by one with an inscrutable illness. They finally discover the cause of the disease after a remarkable sequence of events that many saw as providential. Meanwhile, science, progressing for a half a century along a parallel track, had handed the Baxleys a resolution—not a cure, but a blood test that would reveal who had the gene for the disease and who did not. And science would offer another dilemma—fertility specialists had created a way to spare the children through an expensive process.
Last year one of the books that I read and reviewed for my blog was Inside the O’Briens (Lisa Genova) – the story of a Boston family where the Patriarch is diagnosed with Huntington’s Disease – a progressive disease that causes the breakdown of nerve cells in the brain. Around the same time I posted my review, I also proposed a question on my facebook page about genetic testing – specifically, if there was a 100% certainty that you would inherit a disease if you carried the gene for it (i.e. Huntington’s), would you pursue the test or would you want to just see how your odds fall? It was interesting reading some of the responses from people I know and others who came across that question, as a friend of a friend. Fast forward to March this year and I saw mention of a non-fiction book with a similar theme mentioned on Doing Dewey Non-Fiction Friday that I just knew I needed to read in the very near future.
Mercies in Disguise is told in 2 parallel stories – that of the Baxley family, where grandfather, father, and brothers had been afflicted by an unknown disease – a disease that resembled Alzheimer’s and a touch of Huntington’s but not just that…and the scientist who discovered the disease approximately half a century earlier. From the get-go, I was drawn into Ms. Kolata’s story-telling – she managed to weave science, family dynamics and medical mystery in a way that I wanted to keep reading (in fact, I pretty much read the entire book in one sitting while waiting for my car to be serviced). There were lots of questions about the ethics of medical advancements including genetic testing for embryos. It is definitely a book that make me think a lot about what I would do if I was put into the same situation as members of the Baxter family. Personally, I’d probably fall on the side of wanting to know my future so that I could plan for it – even if I know that I might die at a very young age…but thankfully, I’ve not had to make a medical decision like that. I think I found the medical side of the story – how the disease was identified to be less interesting than the family dynamics overall – not saying I didn’t like it, but the Baxter family portion was more intriguing to me – maybe because it was a bit over my head with some of the science (I mean, I did get a D in college biology…sooooo).