Forever Fix

Dr. Ricki Lewis manages, in "The Forever Fix," to make compelling the science of gene therapy, even for those of us who haven't taken a science course in quite awhile. Her accomplishment derives from an ability to seamlessly weave the technical aspects, which she compares to items we do know like a toothbrush or a bicycle, into the dramatic stories of real people -- children who experience devastating diseases and the parents who advocate for them. The author's compassion for these people is palpable.If you've seen the movie, "Lorenzo's Oil," you have some idea of the agony and battle that the parents of a rare-disease child confront. Lorenzo's is one of the stories covered in Lewis's book. With the same attention to detail exhibited in the movie, Lewis draws you into the lives of the children she interacts with, their parents, their brothers and sisters, grandparents, and family friends; you feel like you know them. As a scientific journalist, Lewis also brings to life the personalities and struggles of the scientist-researchers racing with time to combat the debilitating illnesses that are killing their children-patients. Lewis guides the reader through a labyrinth of bureaucratic regulation, devastating delays, and the tragic deaths that occur in the early days of gene therapy experimentation.Lewis tackles head-on the philosophical questions raised by the involvement of human patients in the infancy of this cutting-edge technology. What does consent mean in the context of human experimentation? How much money should go toward treating the rare disease when that money and research could be going to treat victims of more widespread conditions? How does a scientist weigh her/his devotion to the objectivity of science in light of a patient's needs? Why do pharmaceutical companies pose a potential obstacle to expanding research in gene therapy?Surely, upon finishing this book, you will know more than you thought you'd be able to grasp from a factual narrative on gene therapy. And you won't soon forget the people - the children, parents, scientists, and even the dogs - who have paved the way for further gene therapy interventions and a "forever fix."

I started out as just another pre-medical freshman at Duke University in 1988, but I soon discovered that there was a prevailing mentality ruling mainstream science that was anathema to me, so I failed to thrive and maintain interest in the health sciences, bouncing around from one field to another within the sciences over the years.Most recently, after an aborted educational start in the field of natural medicine, I've come to the conclusion that -- aside from a much-needed nutritional revolution, the other half of what simply must happen in order to advance a TRUE health improvement revolution -- we simply must attack those intractable problems of human health for which dietary and nutritional changes simply would either not be reasonably sustainable, or at all sufficient.Much to the enraged chagrin of the Rockefellerian petro-pharmaceutical mafia that has ruled human health since the very late 1800's, we must find a way to actually repair maladaptive genes themselves and finally break the shackles of undue drug dependency once and for all.With all that said, I was delighted to find Ricki Lewis' book. She, perhaps alone, truly gets it. She truly understands that the nature of the problem is, as she so rightly puts it, "science for science's sake", rather than for the sake of the greater human race who sincerely needs what would otherwise be its civilizing fruits. Dr. Lewis has written a book that, to my knowledge, is singular of kind: it really gives a damn about the good, and shows us clearly and plainly how we may not only get there, but how we have already begun to get there -- to lasting and humane fixes rather than deliberately temporary and purely profiteering temporary band-aids.

I have been trained as a scientist and found this book to be fascinating. I remember taking a course in bioethics and learning of its renewed importance in the age of gene therapy. Unfortunately, the author chooses to concentrate on one case which she identifies as being true gene therapy when in fact, it is a partial treatment and may only be successful in a very small subset of young patients. The explanations of the genetics involved and the biological mechanisms used are primarily a means of showing off the author's talents. Having written a textbook for undergraduate students, I am sure she is knowledgeable but this should not be read as a textbook, but as a biographical description of what can go wrong and what can go right when gene therapy is attempted. Nevertheless, it does hold the reader's attention and that is no small thing when explicating such a difficult subject.

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 (and the history of 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 many patients and their families. 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.

Superb book that brings out the heart-breaking failures and heart-warming successes on which gene therapy has grown.

Interessante lettura che ci aggiorna sulle moderne terapie geniche sviluppate negli ultimi anni. Ricki Lewis è autrice di un ottimo testo di Genetica Umana e per apprezzare al meglio questo suo libro sarebbe meglio avere qualche conoscenza di base di genetica.