The Forever Fix: Gene Therapy and the Boy Who Saved It

6036 stars
Ricki Lewis

The Forever Fix: Gene Therapy and the Boy Who Saved It by Ricki Lewis PDF, TXT, ePub, PDB, RTF, FB2.

Title The Forever Fix: Gene Therapy and the Boy Who Saved It
Rating 6036 stars
Author Ricki Lewis
Pages 336
Isbn 0312681909
Review As a disclaimer I should say that genetics is part of what I do at work, even though I don't work on gene therapy in particular. But aside from the topic, which I knew I would enjoy, I loved Dr. Lewis's writing and the way she effortlessly folded all the science into the narrative. I am grateful to Dr. Lewis because through this wonderful book she humanized scientific research, giving a voice to the struggle of not just one, but many families, and she gave a voice and face to the doctors and the researchers who face many failures for every small step forward. Science is not dry and impersonal. Science is made of people, not just the scientists, but also the people who ultimately benefit from it, and the ones who, due to unfortunate events, didn't benefit but were still part of what made the successes possible. A wonderful read and a truly touching story.

Description

fairly readable account of the false starts and subsequent improvements with gene therapy, centering on story of a young, nearly blind, boy whose vision was improved dramatically, and to a lesser extent on other anecdotes.

The nuances of the preclinical animal research were hard for me to follow, and perhaps the sense that this may be true of many readers was the motivation for including so many human interest stories. Not really a seamless fit, though, in that the one has almost nothing to do with the other. When NBC Olympics coverage delves into athletes' background stories (here's Mo Farah drinking tea at the house in Oregon where he moved to train under Alberto Salazar, and here's his wife talking about the family sacrifices involved in relocation, and.......), it may or may not be to your taste as a viewer, but at least it relates directly to their accomplishments. The life story of the kid with a rare genetic disease could be completely the opposite of what it is, and it wouldn't change the scientific developments involved in (someone else's) fixing the problem in a chicken or pig one bit.

Two interesting side issues she covers well: (a) the phenomenal efforts some parents have undertaken to raise funds for gene therapy trials relevant to their kids' disorders, in order to speed up the otherwise sluggish process of getting NIH grants for early-phase studies etc. etc.; (b) difficulty of interesting big Pharma in funding the research, partly because some of the disorders are rare but also because if it works, it works (forever fix). Much more profit to be made in something like cholesterol-lowering drugs, targeting a common condition with a treatment that you have to keep taking indefinitely.




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