THE FOREVER FIX

Science journalist Lewis (Human Genetics: The Basics, 2010, etc.) examines the emergence of a new medical frontier.

The author opens in 2008, when 8-year-old Corey Haas's attention was drawn to a hot air balloon and he cried out, “It hurts!” Just four days before he had been legally blind due to a mutation that prevented his eyes from processing visual signals; now for the first time in his life, the boy was experiencing the brilliance of full sunlight. Lewis takes readers through the tortuous process that turned young Corey into a poster boy for gene therapy nine years after the tragic death of 18-year-old Jesse Gelsinger from a similar operation. Gelsinger's operation was intended to correct a mutated gene that affected his liver function. In both cases, the mutated gene was identified, and the boys were deliberately “infected” with genetically engineered viruses “sent into the body as microscopic ferries” bearing healthy replacement genes. Gelsinger, however, had suffered from an “unusual and deadly immune-system response” to the virus. Both boys took part in experimental protocols with the informed consent of their guardians, who accepted the risk involved. Lewis chronicles the painstaking search for the specific genes responsible for genetic diseases, and she recounts the human stories behind each discovery, triumph and failure. A sidelight on this absorbing story is the development of rare genetic disorders in populations such as Jewish survivors of pogroms, whose gene pool suffered “the genetic consequences of serial strangulation.” The author also looks at the struggle to make genetic testing freely available to at-risk couples contemplating marriage.

A fascinating account of groundbreaking science and the people who make it possible.